In yet another spitting in the eye by the Obama administration of persons with autism and/or parents of these persons who long for a cure for this horrible affliction, we see that anti-cure activist Ari Ne'eman has been appointed as one of the public members of the interagency autism coordinating committee. I see that one of my favorite neurodiversity hatemongers Harry Williams (AKA "Socrates") Is shouting about this from the figurative rooftops The IACC is the government agency that runs the show involving autism research activities that the federal government finances. Ironically enough, though this agency was created as a byproduct of the 2006 Combating autism act which had as its intent to ultimately find a cure for autism. When John Robison took a job as a member of a scientific advisory board on autism speaks, Mr. Williams immediately called him a traitor and a house aspie. We have to wonder why Mr. Williams, who is apparently a member of a British ASAN affiliate has not reserved the same slurs for his buddy, Mr. Ne'eman.
The law states that at least one of the public board members has to be on the autism spectrum. Ne'eman is now not only the second autistic person to be appointed to the public board, but also the second person with autism who has opposed curing this disease. So far the number of pro-cure autistics appointed is zilch. There is a snowball's chance in hell that I will be appointed. The other ASD public member, Stephen Shore, has been a much less polarizing figure than Ne'eman and does not go out of his way to publicize his anti-cure beliefs. It can be noted that Shore, who makes his living as an autism consultant, special education professor, and conference speaker would be unemployed if a cure for autism were found.
When the Obama administration tried to appoint Ne'eman to the NDC, our side was successfully able to oppose the appointment as it had to be confirmed by the senate and all it took was at least one senator (Tom Coburn, Oklahoma republican, rumor has it being the most likely holdout assuming there are not others) to hold up and possibly abort Ne'eman's nomination, they went out and appointed Ne'eman to this organization. Apparently HHS secretary Kathleen Sebelius can unilaterally appoint whomever the Obama administration wants and is accountable to no one and the nomination can't be held up by the senate. So, neurodiversity lobbied for this appointment when they were not successful in getting Ne'eman into the NDC. However, it would seem that this is even worse than an appointment to the NDC, as it deals with just autism and not other disabilities and also money that was intended to go for finding a cure for autism.
What is most interesting about this appointment is that ASAN along with Ne'eman were among the most vigorous opponents of the combating autism act when it was debated in congress about 3-1/2-4 years ago. When their efforts to prevent passing of this law failed, they immediately jumped on the bandwagon and attempted to lobby the IACC with their warped agenda. I have written about this previously. How convenient for Ari Ne'eman to be serving as a member of a committee that was passed by a law that he and his cronies vigorously opposed!
I am wondering what next? How soon will Al Qaeda be analyzing classified CIA documents? How soon will members of the Mafia be appointed to the police commissions in the cities in which they live?
We have seen that autism speaks is a colossal joke and has become nothing more than a neurodiversity sockpuppet given that they have given half a million dollars to neurodiversity rogue Laurent Mottron who along with his pals Morton Gernsbacher and Michelle Dawson has stated that autism is not harmful. Now the federal government is a joke in that it allows anti-cure autistics, Stephen Shore, John Elder Robison and now last but certainly not least Ari Ne'eman to run the show on autism research. (Robison has not been on the IACC but was appointed for some role in reviewing federal grants for autism research)
Barack Obama: I know you will never read this, but you just want me to be lonely, you want me to be unemployed and have poor fine motor coordination and not do anything well and not be able to get anything done and to have uncontrollable self-stimulatory movements. You don't want Dov Shestack, John Belmonte to ever speak a word or live outside of an institution. The actions of your administration as far as autism policy goes are reprehensible, beyond the pale really. You obviously want handicapped people to suffer. You want vicious hatemongers who Ne'eman is good pals with to harass me and ridicule me and to spread hate and libel.
Well, I hope someday in spite of the gross incompetence and lack of ethics of both autism speaks and the federal government that somehow someday we can find a cure and prevention for this disease or maybe before a cure is found a way can be found to mitigate it and make life easier for those on the spectrum so they won't have to live with all the hardships and limitations that this condition engenders.
I will be writing to my congressman and senators about this gross miscarriage of justice. I realize that this will probably be as effective as writing a letter to Santa Claus. If anything interesting comes out of it (which I doubt) I will write about it in autism's gadfly.
Friday, April 30, 2010
Thursday, April 22, 2010
Another autreat conference
I see that one of my favorite organizations, autism network international, which has an annual "autreat" has a list of their presenters now. Though I have never attended an autreat, as far as I know, I am still a member in good standing, being one of the earliest people to join this stellar organization back in the early 90s.
My history with ANI is rather interesting. In 1993 or so , I was told by my friend Kathy Lissner (now Kathy Lissner-Grant) whom I started to have a snail mail and phone correspondence with, thanks to our mutual pen pal, David Miedzianik, of an organization for persons on the autism spectrum that was starting worldwide. This was right at the time people were starting to recognize that autism was not uncommon in persons without intellectual impairments. Shortly before this I became one of the founding members of AGUA (adult gathering united autistic) back in 1993. AGUA only meets in the Los Angeles area. She and new best selling author Donna Williams and a fellow named Jim Sinclair had gotten together and started this organization and they were getting fellow autistics to join. They would also be producing a newsletter called "Our Voice" in which autistic people could publish their non-fiction writings. I was excited by this prospect. In 1994 if someone told me there were actually people on the autism spectrum who felt that autism was not a disease or disorder but merely a different way of being and they were actually opposed to curing autism, I would have thought they were nuts or putting me on. Little did I know that this organization would in part be the genesis of that ugly cult of deranged hatemongers called neurodiversity.
I became a member, had two articles published in the original "our voice" newsletter. This was the first time I had actually published anything anywhere. It was rather exciting. Later Jim Sinclair would stop producing the newsletter. Just before they stopped publishing, I read a piece by Jim Sinclair and was shocked to see that he had written something saying that autism was not a disorder but a different way of being. How shocked he was that people would even fund medical research in autism and then compare it to diseases such as blood cancers which actually killed people. He wrote an editorial opposing medical funding of autism. This was sort of a turning point in my career as an autism gadfly as this was my first exposure to neurodiversity and the "we don't need no stinkin' cure" mentality.
They also had an internet mailing list in the early days of the internet. They had a variety of rules that you could not talk about curing autism or autism as a bad thing and various other forms of censorship. Again, I was rather shocked and asked that I be removed from the mailing list.
It seems I am still a member as every year they send me information and registration forms for their autreat. I am not sure how I can resign the organization and it is probably not worth my while to attempt to do so. So, one skeleton I have in my cupboard is that I am actually a member of a neurodiversity organization!
Well, now that sordid history is out of the way, I read some of the presentations with interest.
I see that rogue neurodiversity researcher Morton Gernsbacher with her son Drew Goldsmith and the infamous Amanda Baggs will be giving a presentation on how terrible the labels of high functioning and low functioning are. It is noted that Amanda has been called by low functioning and high functioning and she rejects both labels. I wonder what the difference is between the term "low functioning" as a relative term and "severe". Gernsbacher has no qualms about using the term "severe" to describe some persons with autism relative to others in her essay, autistics need acceptance and not cure. In this essay she stated that persons with severe autism have made great contributions to the arts and sciences yet neglects to cite a single example of such a person. Her son, allegedly autistic, was a high school senior at age 12. Somehow I think the true problems that persons with autism face are an abstraction to Dr. Gernsbacher.
In terms of getting her disability check and public housing, Amanda does not mind telling the government she is dysfunctional. Most persons with an interest in ND know the story of Amanda attending college at age 14, persons who knew her stating she showed no signs of autism or disability, losing her speech at age 20, and then claiming an autism diagnosis, after previously claiming to be a schizophrenic and thinking she was an elf.
They also have a presentation that deals with bullying and cyberbullying and how to counter it. This is something neurodiversity is an expert at, having the vicious hate mongers such as Clay Adams, Harry Williams (Socrates), David Andrews and the late (but not great) "Alyric" who would spend time belittling and bullying anyone on the internet who would dare question the sacred cow of neurodiversity, particularly someone else on the spectrum of autism. If club ND were really sincere, they would be giving a presentation giving lessons in bullying rather than ways to prevent, what they themselves truly promote.
I see that Ari Ne'eman is giving a presentation that deals with prejudice against autistic persons. Though I agree that prejudice does exist and to an extent ND has some legitimate issues, they only reinforce prejudice towards those of us on the spectrum, with their lies, propaganda and vicious hate. Also, Ne'eman quite clearly does not even believe that autism is a disability through his previous statements that have been well-documented on autism's gadfly. Therefore, he will mislead everyone and claim that if prejudice were eliminated autistics would function just fine in the world. Though that may be true for this individual with a possible future as a lawyer and Rhoades Scholar, it is not true for the other 99.9% of us.
I suppose it could have been worse. Though I lacked the prescience not to have joined ANI in the first place, at least I never went to one of those autricks. I wait once again for my annual letter with the form for enrolling in an autrick so I can joyfully chuck it in the wastebasket.
My history with ANI is rather interesting. In 1993 or so , I was told by my friend Kathy Lissner (now Kathy Lissner-Grant) whom I started to have a snail mail and phone correspondence with, thanks to our mutual pen pal, David Miedzianik, of an organization for persons on the autism spectrum that was starting worldwide. This was right at the time people were starting to recognize that autism was not uncommon in persons without intellectual impairments. Shortly before this I became one of the founding members of AGUA (adult gathering united autistic) back in 1993. AGUA only meets in the Los Angeles area. She and new best selling author Donna Williams and a fellow named Jim Sinclair had gotten together and started this organization and they were getting fellow autistics to join. They would also be producing a newsletter called "Our Voice" in which autistic people could publish their non-fiction writings. I was excited by this prospect. In 1994 if someone told me there were actually people on the autism spectrum who felt that autism was not a disease or disorder but merely a different way of being and they were actually opposed to curing autism, I would have thought they were nuts or putting me on. Little did I know that this organization would in part be the genesis of that ugly cult of deranged hatemongers called neurodiversity.
I became a member, had two articles published in the original "our voice" newsletter. This was the first time I had actually published anything anywhere. It was rather exciting. Later Jim Sinclair would stop producing the newsletter. Just before they stopped publishing, I read a piece by Jim Sinclair and was shocked to see that he had written something saying that autism was not a disorder but a different way of being. How shocked he was that people would even fund medical research in autism and then compare it to diseases such as blood cancers which actually killed people. He wrote an editorial opposing medical funding of autism. This was sort of a turning point in my career as an autism gadfly as this was my first exposure to neurodiversity and the "we don't need no stinkin' cure" mentality.
They also had an internet mailing list in the early days of the internet. They had a variety of rules that you could not talk about curing autism or autism as a bad thing and various other forms of censorship. Again, I was rather shocked and asked that I be removed from the mailing list.
It seems I am still a member as every year they send me information and registration forms for their autreat. I am not sure how I can resign the organization and it is probably not worth my while to attempt to do so. So, one skeleton I have in my cupboard is that I am actually a member of a neurodiversity organization!
Well, now that sordid history is out of the way, I read some of the presentations with interest.
I see that rogue neurodiversity researcher Morton Gernsbacher with her son Drew Goldsmith and the infamous Amanda Baggs will be giving a presentation on how terrible the labels of high functioning and low functioning are. It is noted that Amanda has been called by low functioning and high functioning and she rejects both labels. I wonder what the difference is between the term "low functioning" as a relative term and "severe". Gernsbacher has no qualms about using the term "severe" to describe some persons with autism relative to others in her essay, autistics need acceptance and not cure. In this essay she stated that persons with severe autism have made great contributions to the arts and sciences yet neglects to cite a single example of such a person. Her son, allegedly autistic, was a high school senior at age 12. Somehow I think the true problems that persons with autism face are an abstraction to Dr. Gernsbacher.
In terms of getting her disability check and public housing, Amanda does not mind telling the government she is dysfunctional. Most persons with an interest in ND know the story of Amanda attending college at age 14, persons who knew her stating she showed no signs of autism or disability, losing her speech at age 20, and then claiming an autism diagnosis, after previously claiming to be a schizophrenic and thinking she was an elf.
They also have a presentation that deals with bullying and cyberbullying and how to counter it. This is something neurodiversity is an expert at, having the vicious hate mongers such as Clay Adams, Harry Williams (Socrates), David Andrews and the late (but not great) "Alyric" who would spend time belittling and bullying anyone on the internet who would dare question the sacred cow of neurodiversity, particularly someone else on the spectrum of autism. If club ND were really sincere, they would be giving a presentation giving lessons in bullying rather than ways to prevent, what they themselves truly promote.
I see that Ari Ne'eman is giving a presentation that deals with prejudice against autistic persons. Though I agree that prejudice does exist and to an extent ND has some legitimate issues, they only reinforce prejudice towards those of us on the spectrum, with their lies, propaganda and vicious hate. Also, Ne'eman quite clearly does not even believe that autism is a disability through his previous statements that have been well-documented on autism's gadfly. Therefore, he will mislead everyone and claim that if prejudice were eliminated autistics would function just fine in the world. Though that may be true for this individual with a possible future as a lawyer and Rhoades Scholar, it is not true for the other 99.9% of us.
I suppose it could have been worse. Though I lacked the prescience not to have joined ANI in the first place, at least I never went to one of those autricks. I wait once again for my annual letter with the form for enrolling in an autrick so I can joyfully chuck it in the wastebasket.
Wednesday, April 21, 2010
Bedwetting: another autistic problem?
Last night I was watching the Larry King show and comedienne Sarah Silverman was on plugging her new book which in part deals with her childhood problem of bedwetting.
I have written about a number of problems that my autism has caused me in the past, my twiddling (self-stimulatory behaviors) which get in the way of my being able to accomplish things and are not unlike an insidious drug addiction. My ornithophobia (fear of birds) which inspired a short story that I wrote some years ago. I have also written about my lack of a social life, in particular lack of romantic relationships with women. I have also written, I think, about scholastic problems, social judgment and behavioral problems and my loud voice which repulses people. I have also written about my perceptual motor impairments and fine motor coordination problems which impairs my ability to handwrite and draw. Also, are the funny movements I make which draw attention to myself.
On watching the show with Ms. Silverman, I was reminded of my bedwetting which was a problem in my early childhood. It had been so removed from my past that I had forgotten about it for a while.
Some old memories have been jogged and now for the past half day I have been thinking of the old days when I used to wet the bed chronically from as long as I can remember from my earliest childhood up until about age 10 or 11. Between ages 11 and 13 it declined but I would still wet the bed once in a while. Apparently, at about age 13 or 14, this stopped altogether. Aside from being almost completely nonverbal between ages two and a half to about four years old and then recovering my speech, this was the only autistic problem that was completely resolved by my outgrowing it.
I still remember waking up in a urine-infested puddle during the night, absolutely stinking. Also, the urine would biochemically decompose into ammonia and it would sting like hell. I also recall the fights with my parents when they would restrict my fluids during the day and evening in order to try to solve or mitigate this problem. I knew that it was not normal and I did not know the cause of it. I knew it had something to do with my disability, which I later found out was an autism spectrum disorder.
I still don't know the exact etiology, but I had read that bedwetting often resulted from psychological stress or problems of which I had many both due to my autism itself and the teasing and ridicule I would get from "peers" and from fights with my parents and my sister and some nasty and cruel things my therapist would say at times. Also it could be the result of a weak bladder due to the motor problems I have had ( and still have to this day).
I was curious, so I googled a few things about autism and bedwetting. I found this interesting piece. They talk about bedwetting is in fact common in children diagnosed with autism. They cite lack of toilet training which I did not have a problem with at least from age 6 on. They also talk about hypotonia as being one of the possible etiologies. This might be in line with my motor coordination impairments.
One interesting theory that one mother posited in the article was that bedwetting was due to damage in the areas of the cerebellum and basal ganglia as these are two areas of the brain that she said were known to be damaged in autism.
The reports of problems of the cerebellum in autism have been well known, particularly loss of purkinje cells in various autopsy reports. Also both Courchesne and a Japanese researcher named Hashimoto and possibly others have found problems in the vermis of the cerebellum on MRI scans. However, this has not really been replicated on autopsies which show other parts of the cerebellum damaged and the vermis intact.
I am not sure what research if any has shown basal ganglia damage in autism. I do know that many years ago, Ralph Maurer and Antonio Demasio wrote a journal article suggesting that autism could be a problem with the frontal lobes and basal ganglia as a lot of the problems with autism had similarities between persons who as adults had lesions in these areas; this article predated the autopsies and MRI scans showing cerebellar abnormalities.
Jeanne Brohart, the parent who postulated this theory, points towards the fact that the basal ganglia have motor control as one of their functions. Of course one problem with this interpretation (as well as possibly Maurer and Demasio's old paper) is that both Eric Courchesne and Ralph Adolphs have told me that developmental lesions are different than adult lesions, so inferring functioning from adult brain problems as well as the functions the basal ganglia and other brain nuclei control, cannot necessarily be inferred in early childhood problems such as autism.
Bedwetting was a real pain, as I said before, I had forgotten about it, but had my memory jogged after all these years by the King-Silverman interview. I just hope that someday a cure or legitimate treatment can be found so that bedwetting and other issues won't be a problem for persons with autism, and now we can add another thing that makes autism bad in perhaps a fairly good number of persons who have this condition.
I have written about a number of problems that my autism has caused me in the past, my twiddling (self-stimulatory behaviors) which get in the way of my being able to accomplish things and are not unlike an insidious drug addiction. My ornithophobia (fear of birds) which inspired a short story that I wrote some years ago. I have also written about my lack of a social life, in particular lack of romantic relationships with women. I have also written, I think, about scholastic problems, social judgment and behavioral problems and my loud voice which repulses people. I have also written about my perceptual motor impairments and fine motor coordination problems which impairs my ability to handwrite and draw. Also, are the funny movements I make which draw attention to myself.
On watching the show with Ms. Silverman, I was reminded of my bedwetting which was a problem in my early childhood. It had been so removed from my past that I had forgotten about it for a while.
Some old memories have been jogged and now for the past half day I have been thinking of the old days when I used to wet the bed chronically from as long as I can remember from my earliest childhood up until about age 10 or 11. Between ages 11 and 13 it declined but I would still wet the bed once in a while. Apparently, at about age 13 or 14, this stopped altogether. Aside from being almost completely nonverbal between ages two and a half to about four years old and then recovering my speech, this was the only autistic problem that was completely resolved by my outgrowing it.
I still remember waking up in a urine-infested puddle during the night, absolutely stinking. Also, the urine would biochemically decompose into ammonia and it would sting like hell. I also recall the fights with my parents when they would restrict my fluids during the day and evening in order to try to solve or mitigate this problem. I knew that it was not normal and I did not know the cause of it. I knew it had something to do with my disability, which I later found out was an autism spectrum disorder.
I still don't know the exact etiology, but I had read that bedwetting often resulted from psychological stress or problems of which I had many both due to my autism itself and the teasing and ridicule I would get from "peers" and from fights with my parents and my sister and some nasty and cruel things my therapist would say at times. Also it could be the result of a weak bladder due to the motor problems I have had ( and still have to this day).
I was curious, so I googled a few things about autism and bedwetting. I found this interesting piece. They talk about bedwetting is in fact common in children diagnosed with autism. They cite lack of toilet training which I did not have a problem with at least from age 6 on. They also talk about hypotonia as being one of the possible etiologies. This might be in line with my motor coordination impairments.
One interesting theory that one mother posited in the article was that bedwetting was due to damage in the areas of the cerebellum and basal ganglia as these are two areas of the brain that she said were known to be damaged in autism.
The reports of problems of the cerebellum in autism have been well known, particularly loss of purkinje cells in various autopsy reports. Also both Courchesne and a Japanese researcher named Hashimoto and possibly others have found problems in the vermis of the cerebellum on MRI scans. However, this has not really been replicated on autopsies which show other parts of the cerebellum damaged and the vermis intact.
I am not sure what research if any has shown basal ganglia damage in autism. I do know that many years ago, Ralph Maurer and Antonio Demasio wrote a journal article suggesting that autism could be a problem with the frontal lobes and basal ganglia as a lot of the problems with autism had similarities between persons who as adults had lesions in these areas; this article predated the autopsies and MRI scans showing cerebellar abnormalities.
Jeanne Brohart, the parent who postulated this theory, points towards the fact that the basal ganglia have motor control as one of their functions. Of course one problem with this interpretation (as well as possibly Maurer and Demasio's old paper) is that both Eric Courchesne and Ralph Adolphs have told me that developmental lesions are different than adult lesions, so inferring functioning from adult brain problems as well as the functions the basal ganglia and other brain nuclei control, cannot necessarily be inferred in early childhood problems such as autism.
Bedwetting was a real pain, as I said before, I had forgotten about it, but had my memory jogged after all these years by the King-Silverman interview. I just hope that someday a cure or legitimate treatment can be found so that bedwetting and other issues won't be a problem for persons with autism, and now we can add another thing that makes autism bad in perhaps a fairly good number of persons who have this condition.
Saturday, April 10, 2010
New story uploaded
I have decided to upload my 14th story (13 possibly being an unlucky number and my having slight triskaidekaphobia) on the fiction section of my stories web page. I wrote this story several years ago and was not sure I wanted to upload any more stories, as I don't think my stories get many readers.
Anyhow, the story is Dog Bites Man. It has nothing to do with autism, but I feel is a good read.
Thanks in advance to anyone who takes the time to read it.
Anyhow, the story is Dog Bites Man. It has nothing to do with autism, but I feel is a good read.
Thanks in advance to anyone who takes the time to read it.
my aborted MRI scan at cal tech
Another update on my adventures at the cal tech emotions lab, co-starring Ralph Adolphs, Dan Kennedy, Katherine Holcomb and perhaps a few others. I was going to have a structural MRI scan which i think the purpose of was to get some baseline measurements of some resting activity of my brain and/or possibly to do connectivity studies using my brain as one of the sample brains. I have written previously in one place about my experiences many years ago being a research subject in a couple of MRI studies with the Eric Courchesne research group in San Diego many years ago. I also wrote about it in a dated blog post from almost two years ago.
Right before I was last a research subject in the Courchesne group, Greg Allen, a graduate student at UCSD at the time, was doing a study involving functional MRI scanning which is different from structural imaging in that you have to do a task while being scanned and it measures the blood flow to various areas of the brain while doing the task. I agreed to be one of the subjects in this study. After a two hour drive to San Diego from L.A. I was not able to fit into the scanner along with the computer equipment that was in the scanner so that the person could do the task. I was not able to participate in that study.
Well, the same thing happened last Wednesday. Apparently the technology of scans has changed and they have to put coil around your head in order to measure the brain. The coil for this machine was quite small and could not fit on my face so I was not able to participate in this study either. Katherine, who is the coordinator of research in the lab, told me that they have another scanner that has a larger coil that would likely fit me but they still did not have the software or other things they needed in that scanner and they would call me, so maybe I will still be able to participate at some point. Of course they do research involving functional MRI as well, so I might not be able to fit with the computer equipment in that one also. But we will see.
I participated in some other studies that were not MRI, such as filling out a questionnaire, evaluating positive and negative emotions on these faces on a computer and taking some stuff that was apparently from an abridged version of the Wechsler IQ test.
Apparently the review board the the CIT emotions lab is under does not allow people to know the results of their scans and is not allowed to show them pictures of their own brains, so I would not have been able to write the same stuff that I wrote in the past about my experiences with the Courchesne group anyhow. However, it was a disappoint that I could not participate as a subject at this time.
I wanted to go to graduate school and become a brain researcher but my disability impaired me from getting there. I have written elsewhere about how rogue neurodiversity researcher Morton Gernsbacher trivialized my dreams. Being able to be a research subject is the next best thing, though not sure how much I will ever know about the brain and autism and ongoing research, let alone transcend the knowledge of Dan Kennedy, Matthew Belmonte, Ralph Adolphs and Eric Courchesne and others as per my pipe dream. So it goes.
Right before I was last a research subject in the Courchesne group, Greg Allen, a graduate student at UCSD at the time, was doing a study involving functional MRI scanning which is different from structural imaging in that you have to do a task while being scanned and it measures the blood flow to various areas of the brain while doing the task. I agreed to be one of the subjects in this study. After a two hour drive to San Diego from L.A. I was not able to fit into the scanner along with the computer equipment that was in the scanner so that the person could do the task. I was not able to participate in that study.
Well, the same thing happened last Wednesday. Apparently the technology of scans has changed and they have to put coil around your head in order to measure the brain. The coil for this machine was quite small and could not fit on my face so I was not able to participate in this study either. Katherine, who is the coordinator of research in the lab, told me that they have another scanner that has a larger coil that would likely fit me but they still did not have the software or other things they needed in that scanner and they would call me, so maybe I will still be able to participate at some point. Of course they do research involving functional MRI as well, so I might not be able to fit with the computer equipment in that one also. But we will see.
I participated in some other studies that were not MRI, such as filling out a questionnaire, evaluating positive and negative emotions on these faces on a computer and taking some stuff that was apparently from an abridged version of the Wechsler IQ test.
Apparently the review board the the CIT emotions lab is under does not allow people to know the results of their scans and is not allowed to show them pictures of their own brains, so I would not have been able to write the same stuff that I wrote in the past about my experiences with the Courchesne group anyhow. However, it was a disappoint that I could not participate as a subject at this time.
I wanted to go to graduate school and become a brain researcher but my disability impaired me from getting there. I have written elsewhere about how rogue neurodiversity researcher Morton Gernsbacher trivialized my dreams. Being able to be a research subject is the next best thing, though not sure how much I will ever know about the brain and autism and ongoing research, let alone transcend the knowledge of Dan Kennedy, Matthew Belmonte, Ralph Adolphs and Eric Courchesne and others as per my pipe dream. So it goes.
Thursday, April 8, 2010
ASAN board member's strange take on autism speaks
I have been reading this gem from Sarah Pripas, ASAN board member, leader of ASAN's UCLA chapter and neurodiversity activist. One of the talking points that got my attention was:
In the public policy arena, pro-neurodiversity organizations are, with our limited budgets, doing our best to improve disability policy. Here I feel compelled to speak about Autism Speaks, an organization which is worth tens of billions of dollars, yet has done comparatively little to address the practical needs of autistic people.
A billion dollars seems like an unfathomable amount of money to me for a charitable organization to have let alone tens of billions of dollars. I realize that Bill Gates and Warren Buffet have this much cash on hand. I realize there might be some huge corporations that have this kind of money, but not very many I would think. Of course, I realize this is a drop in the bucket for what the federal government spends every year, on defense, entitlement programs, government employee's salaries, etc. But it did seem farfetched to me that autism speaks could conceivably have this kind of dough.
In order to factcheck Ms. Pripas' assertion, I came across this webpage from the better business bureau which discusses the actual assets of AS as of the end of 2008. It would seem to contradict Ms. Pripas' bold statement. I will paste the figures from this webpage.
For the year ended December 31, 2008, AS's program expenses were:
Research
36,586,500
Awareness and other services
19,363,917
Total Program Expenses:
$55,950,417 Back To Top
Governance
Chief Executive : Mark Roithmayr, President
Compensation*:
$400,413
Highest Paid Executive: Geri Dawson, Chief Science OfficerCompensation*: $669,751
Financial
The following information is based on AS's audited financial statements (consolidated) for the year ended December 31, 2008:
Walk program and retail partners
34,017,852
Major gifts and other contributions
25,812,625
Special and community events
8,199,054
Government grants
1,754,364
Interest income
318,038
-->Total Income
-->$70,101,933
Total income
$70,101,933
Program expenses
$55,950,417
Fund raising expenses
15,732,997
Administrative expenses
2,960,474
Total expenses
$74,643,888
Expenses in Excess of Income
(4,541,955)
Beginning net assets
14,269,556
Ending net assets
9,727,601
Total liabilities
19,883,915
Total assets
$29,611,516
We see that in the year 2008 autism speaks earned a bit over 70 million and spent nearly 75 million incurring more liabilities than assets in that year.
We see that at the end of 2008 they had nearly 30 million in assets against just under 20 million dollars in liabilities.
as of December 2008, their net assets were less than 10 million dollars.
Certainly a far cry from Pripas' tens of billions of dollars. Where Ms. Pripas obtains her figures I have not one iota. Ms. Pripas also neglects to take into account that her neurodiversity movement conned autism speaks into giving Laurent Mottron a grant that is worth approximately 5% of what were autism speaks' net assets as of about a year ago. Of course AS may have become more healthy in the past year financially, but that seems implausible. Certainly that they were ever worth tens of billions of dollars is a huge stretch to say the least.
Anyone who read this post can correct me in the comments section if I am mistaken but I believe Ms. Pripas is at least on the board of ASAN as well as the leader of their UCLA chapter. Though somewhat lower than Ari Ne'eman in stature, I think she does have a high executive position in the organization.
Yet, this organization who has on its board of directors a person who would make such a gross misstatement of fact, certainly reflects on Ne'eman himself. So perhaps the U.S. Senate could look at this and see just who Obama is proposing to the NDC. Someone who has an axe to grind against an organization that is admittedly far from perfect, yet does have as its goal the curation of autism and wanting to help persons on the spectrum lead better lives until a cure is available. Though I have bones of contention with their funding of Mottron, the autism in the workplace dog and pony show and other issues, they are certainly funding some scientific research that at some point will hopefully help handicapped persons with this condition better function in the world.
So far, ASAN had produced nothing of importance. Also, should an organization that would make such a huge clusterfuck in presenting their 'facts' be in control of disability policy in Washington? I think not.
In the public policy arena, pro-neurodiversity organizations are, with our limited budgets, doing our best to improve disability policy. Here I feel compelled to speak about Autism Speaks, an organization which is worth tens of billions of dollars, yet has done comparatively little to address the practical needs of autistic people.
A billion dollars seems like an unfathomable amount of money to me for a charitable organization to have let alone tens of billions of dollars. I realize that Bill Gates and Warren Buffet have this much cash on hand. I realize there might be some huge corporations that have this kind of money, but not very many I would think. Of course, I realize this is a drop in the bucket for what the federal government spends every year, on defense, entitlement programs, government employee's salaries, etc. But it did seem farfetched to me that autism speaks could conceivably have this kind of dough.
In order to factcheck Ms. Pripas' assertion, I came across this webpage from the better business bureau which discusses the actual assets of AS as of the end of 2008. It would seem to contradict Ms. Pripas' bold statement. I will paste the figures from this webpage.
For the year ended December 31, 2008, AS's program expenses were:
Research
36,586,500
Awareness and other services
19,363,917
Total Program Expenses:
$55,950,417 Back To Top
Governance
Chief Executive : Mark Roithmayr, President
Compensation*:
$400,413
Highest Paid Executive: Geri Dawson, Chief Science OfficerCompensation*: $669,751
Financial
The following information is based on AS's audited financial statements (consolidated) for the year ended December 31, 2008:
Walk program and retail partners
34,017,852
Major gifts and other contributions
25,812,625
Special and community events
8,199,054
Government grants
1,754,364
Interest income
318,038
-->Total Income
-->$70,101,933
Total income
$70,101,933
Program expenses
$55,950,417
Fund raising expenses
15,732,997
Administrative expenses
2,960,474
Total expenses
$74,643,888
Expenses in Excess of Income
(4,541,955)
Beginning net assets
14,269,556
Ending net assets
9,727,601
Total liabilities
19,883,915
Total assets
$29,611,516
We see that in the year 2008 autism speaks earned a bit over 70 million and spent nearly 75 million incurring more liabilities than assets in that year.
We see that at the end of 2008 they had nearly 30 million in assets against just under 20 million dollars in liabilities.
as of December 2008, their net assets were less than 10 million dollars.
Certainly a far cry from Pripas' tens of billions of dollars. Where Ms. Pripas obtains her figures I have not one iota. Ms. Pripas also neglects to take into account that her neurodiversity movement conned autism speaks into giving Laurent Mottron a grant that is worth approximately 5% of what were autism speaks' net assets as of about a year ago. Of course AS may have become more healthy in the past year financially, but that seems implausible. Certainly that they were ever worth tens of billions of dollars is a huge stretch to say the least.
Anyone who read this post can correct me in the comments section if I am mistaken but I believe Ms. Pripas is at least on the board of ASAN as well as the leader of their UCLA chapter. Though somewhat lower than Ari Ne'eman in stature, I think she does have a high executive position in the organization.
Yet, this organization who has on its board of directors a person who would make such a gross misstatement of fact, certainly reflects on Ne'eman himself. So perhaps the U.S. Senate could look at this and see just who Obama is proposing to the NDC. Someone who has an axe to grind against an organization that is admittedly far from perfect, yet does have as its goal the curation of autism and wanting to help persons on the spectrum lead better lives until a cure is available. Though I have bones of contention with their funding of Mottron, the autism in the workplace dog and pony show and other issues, they are certainly funding some scientific research that at some point will hopefully help handicapped persons with this condition better function in the world.
So far, ASAN had produced nothing of importance. Also, should an organization that would make such a huge clusterfuck in presenting their 'facts' be in control of disability policy in Washington? I think not.
Wednesday, April 7, 2010
another one bites the dust
We constantly hear from neurodiversity that funding medical research for autism is different from funding research for cancer or AIDS because the latter diseases kill people.
Perhaps they should tell this to the parents of christian DeJons Perhaps Michelle Dawson, Morton Gernsbacher and Laurent Mottron as well as Autism Speaks who donated half a million dollars to these people should tell Christian's parents that autism isn't harmful
Perhaps they should tell this to the parents of christian DeJons Perhaps Michelle Dawson, Morton Gernsbacher and Laurent Mottron as well as Autism Speaks who donated half a million dollars to these people should tell Christian's parents that autism isn't harmful
Saturday, April 3, 2010
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