I see that Joseph of the autism natural variation blog has decided based on one published report based on the statuses of only 19 people that adults with autism don't have problems with employment nor with marriage.
Whatever comments you want to make on the merits or lack of merits in the recent NHS report on autistic adults, the fact of the matter was it was only based on 19 people, count 'em 19. The authors of the reports extrapolated this number 19 to the greater population claiming that 1% of adults in the UK in private households have autism. However this was just a guess based on mathematical projections.
I will concede I don't know as much about math and statistics as Joseph (having just had one elementary statistics course in a community college more than 30 years ago). However, I find it hard to believe that 19 persons even comes close to a statistically significant number on which to predicate employment and marriage trends in a country of millions of adults where supposedly 1% of them have autism.
In the past Joseph presented some statistic saying that 25% of autistics were employed. As far as I can tell he neglects to mention any source or reference or link for this statistic in any post on his blog. He then goes on to trot out the argument because at one time 70% of autistics were thought to have intellectual retardation and now according to some CDDS data which I don't fully understand because now 70% of the clients in the CDDS with autism are nonretarded, this translates into a 70% employment rate among autistics at some point in time. Never mind that Joseph does not adjust for changing age of entry of autistics into the CDDS with children coming into the system in much greater numbers at age 3 than in the past, making their intelligence more difficult to assess, which would confound the 70% rate of nonretardation, making Joseph's statistic here questionable.
In one statement Joseph goes even further:
In any case, it would seem that adult autistics who live in private households across the UK are largely productive individuals who contribute to the economy in a manner similar to their non-autistic peers.
So Joseph seems to imply that autistic persons are making just as much money as an NT. While engaging in quantitative numbers of employment based on only 19 cases out of at least hundreds of thousands, he neglects to take qualitative matters into consideration, such as the fact the NT is much more likely to be a doctor or lawyer rather than a ditchdigger and vice-versa and dwarfing the employed autist's income. He neglects to take into account job coaches which cost money. Nor the possibility the autistic person is more likely to be a part-time rather than full-time employee than the NT.
So again, we have ND trivialization of an autistics inability to get married or make a living.
I see that one of my favorite hatemongers, the autistic bitch from hell is at it again . Now she is giving Joseph's employment pronouncements a shout-out with no critical thinking. She is also complaining about the fact that a Danish software company has helped some persons on the spectrum get jobs, claiming that this is segregation in the workplace. She compares alleged segregation in the workplace with the mandatory segregation of blacks and whites in the public school systems at one time. I should not even have to comment on why this is a patently absurd comparison, but here goes anyways. There are no laws segregating autistics and nonautistics in the workplace. This company is just helping out people who need jobs who might have trouble getting them otherwise, not necessarily because they are bad employees but due to some prejudice perhaps. This is not the same as a law saying that autists cannot work alongside typical people. There is no such law and the ABFH knows this.
What is more bizarre is the fact she would complain about segregation of autistics in the workplace, yet she supports segregation in the schools of autistic children from their nonhandicapped peers. She has donated money to ASAN and has supported this organization. This is in spite of the fact that Ari Ne'eman and his ASAN cronies have been supporters of the Individuals with Disabilities Education Act and have lobbied congress to mandate full federal funding of this law. Thanks to this law, many parents of autistic children have been able to get the tuition at taxpayer expense to send their kids to segregated special ed schools, so typical children won't have to be offended or disgusted by having autistic children included in classrooms with them. I was in schools like this for 8 years of my life. I suspect that ABFH never spent a day of her life in a special ed setting, which is probably the case for the majority of ND's. Why she would complain about fabricated segregation in the workplace but donate money to an organization that supports a law that helps segregate autistic children from their nonhandicapped peers makes no sense to me. However, nothing ABFH does or says makes sense to me. What can you expect from a woman who says that autistics who don't agree with her should be put to death and turned into cat food.
Well that is some ND Potpourri, stay tuned for some more, I am sure there will be some.
Wednesday, November 4, 2009
Tuesday, November 3, 2009
Will end of Asperger's mean end of neurodiversity?
According to an article in yesterday's new york times there is now talk of eliminating Asperger's syndrome as a diagnosis in the 2012 edition of the DSM. One of the reasons given is that the diagnosis is confounding and means different things to different people.
Asperger's syndrome being included under the rubric of autism has been a boon to two different groups of autism aficionados with whom I have been at loggerheads at various times.
The first group is the mercury militia, vaccines cause autism group of people who claim that there has been an epidemic of autism. They cite the increase in prevalence from 1-4/10,000 to the current rate of 1/150 (or even higher) that has been cited by the CDC and others sources. It is very likely that at least part of the reason for this increase has been the introduction of Asperger's syndrome into the autism lexicon. The same is true for autism speaks and the numbers that they give to generate fund raising. Without these numbers they would not be able to give the simplistic quick fix solutions of chelation and other questionable methods of treating autism. Or the claims that vaccines have caused an alleged autism epidemic. It is unlikely they would have been able to do this without Asperger's.
The second group is an ugly cult called neurodiversity, which claims that autism is not a defect or a disorder but merely a difference. Autistic people would do just fine with the right supports. These people claim to speak from personal experience. Yet it would seem that the vast majority of them have Asperger's rather than an autism spectrum disorder per se. Can they really speak for me let alone others such as John Belmonte or Dov Shestack who cannot speak and have challenges in life quite different from theirs?
University of Michigan professor Catherine Lord has been quoted in the article as saying there is no difference in the diagnostic criteria used to assess Asperger's from high functioning autism. However, my understanding of the situation is different from hers. One of the things that really differentiates high functioning autism from Asperger's is the presence or lack of a speech delay of some sort before the age of 36 months; the former would indicate autism, the latter Asperger's. Though at one time I thought of myself as being possibly Asperger's, now I don't think of myself that way because I did indeed have a speech delay. Though, by most standards, I would consider myself quite high functioning, my problems are probably more severe than most of those in the ND movement and some others who call themselves Asperger's and by extension "autistic". Nowadays autism is often diagnosed in persons before the age of 3. Asperger's is often not diagnosed until about age 8. So it would appear that though there may be some similarities it would seem that this would show that we are talking about two distinct conditions.
Unfortunately, the plan is not to say that persons with Asperger's can no longer call themselves autistic but to include all of these people under one rubric, autism. Not surprisingly, ASAN leader Ari Ne'eman is a proponent of this plan. The article quotes him as saying he does not want to look at himself as being a superior Asperger's person but someone with autism. According to the recent Newsweek magazine article that was done featuring Ne'eman, unlike myself, he did not have a speech delay before the age of 3, but was able to say the names of various dinosaurs at age 2. He was not diagnosed with any sort of an autism spectrum condition until the age of 12. Prior to age 12 his diagnosis was Attention Deficit disorder. If Ne'eman had presented with a clinical picture similar to mine before the age of 3, it is very possible that he would have been diagnosed with autism at the time.
My proposal to the authors of the DSM is to eliminate both Asperger's and PDD and just have one diagnosis of autism. One of the mandatory criterias for whether or not one could be diagnosed as autistic would be to have had a speech delay before the age of 3.
This would not only mean that Ari Ne'eman could no longer call himself "autistic", but the same would probably be able to be said for many if not most of the members of club ND. How many of these autistics actually had a speech delay at age 3? If they didn't, can they really speak for myself and say "most of us don't want to be cured". Or in general talk about how autistics feel. Would they be able to present their views before the IACC from personal experience? Would the autistic self advocacy network have to change its name? It is possible that if the DSM were changed in the manner that I wanted it to be changed this could be the death knell for the neurodiversity movement. Persons interested in autism with a speech delay would be able to read stuff on the internet about autism in peace. We would not be bombarded with the constant trivialization of autism. We would not be insulted because we want a better life for our children or for ourselves. They would no longer be able to call those of us who don't like our autism and wish to be cured of it "quislings". They would no longer be able to claim that they deserve to be on the board of directors of autism speaks because of the old "nothing about us without us" mantra. After all, it would no longer be about them.
I realize all of these scenarios are a pipe dream. Assuming that the DSM is in fact changed and Asperger's is eliminated as a diagnostic category (it may or may not be) they could still say that they are autistic. It is irrelevant that they never had a speech delay or the challenges that more severely autistic persons (even myself included) have had. This is what would probably happen if the DSM were changed, they would just call themselves autistic. They would even, according to the article itself, still be able to use the term Asperger's in the loose sense.
Of course, like Martin Luther King, I have a dream.
Asperger's syndrome being included under the rubric of autism has been a boon to two different groups of autism aficionados with whom I have been at loggerheads at various times.
The first group is the mercury militia, vaccines cause autism group of people who claim that there has been an epidemic of autism. They cite the increase in prevalence from 1-4/10,000 to the current rate of 1/150 (or even higher) that has been cited by the CDC and others sources. It is very likely that at least part of the reason for this increase has been the introduction of Asperger's syndrome into the autism lexicon. The same is true for autism speaks and the numbers that they give to generate fund raising. Without these numbers they would not be able to give the simplistic quick fix solutions of chelation and other questionable methods of treating autism. Or the claims that vaccines have caused an alleged autism epidemic. It is unlikely they would have been able to do this without Asperger's.
The second group is an ugly cult called neurodiversity, which claims that autism is not a defect or a disorder but merely a difference. Autistic people would do just fine with the right supports. These people claim to speak from personal experience. Yet it would seem that the vast majority of them have Asperger's rather than an autism spectrum disorder per se. Can they really speak for me let alone others such as John Belmonte or Dov Shestack who cannot speak and have challenges in life quite different from theirs?
University of Michigan professor Catherine Lord has been quoted in the article as saying there is no difference in the diagnostic criteria used to assess Asperger's from high functioning autism. However, my understanding of the situation is different from hers. One of the things that really differentiates high functioning autism from Asperger's is the presence or lack of a speech delay of some sort before the age of 36 months; the former would indicate autism, the latter Asperger's. Though at one time I thought of myself as being possibly Asperger's, now I don't think of myself that way because I did indeed have a speech delay. Though, by most standards, I would consider myself quite high functioning, my problems are probably more severe than most of those in the ND movement and some others who call themselves Asperger's and by extension "autistic". Nowadays autism is often diagnosed in persons before the age of 3. Asperger's is often not diagnosed until about age 8. So it would appear that though there may be some similarities it would seem that this would show that we are talking about two distinct conditions.
Unfortunately, the plan is not to say that persons with Asperger's can no longer call themselves autistic but to include all of these people under one rubric, autism. Not surprisingly, ASAN leader Ari Ne'eman is a proponent of this plan. The article quotes him as saying he does not want to look at himself as being a superior Asperger's person but someone with autism. According to the recent Newsweek magazine article that was done featuring Ne'eman, unlike myself, he did not have a speech delay before the age of 3, but was able to say the names of various dinosaurs at age 2. He was not diagnosed with any sort of an autism spectrum condition until the age of 12. Prior to age 12 his diagnosis was Attention Deficit disorder. If Ne'eman had presented with a clinical picture similar to mine before the age of 3, it is very possible that he would have been diagnosed with autism at the time.
My proposal to the authors of the DSM is to eliminate both Asperger's and PDD and just have one diagnosis of autism. One of the mandatory criterias for whether or not one could be diagnosed as autistic would be to have had a speech delay before the age of 3.
This would not only mean that Ari Ne'eman could no longer call himself "autistic", but the same would probably be able to be said for many if not most of the members of club ND. How many of these autistics actually had a speech delay at age 3? If they didn't, can they really speak for myself and say "most of us don't want to be cured". Or in general talk about how autistics feel. Would they be able to present their views before the IACC from personal experience? Would the autistic self advocacy network have to change its name? It is possible that if the DSM were changed in the manner that I wanted it to be changed this could be the death knell for the neurodiversity movement. Persons interested in autism with a speech delay would be able to read stuff on the internet about autism in peace. We would not be bombarded with the constant trivialization of autism. We would not be insulted because we want a better life for our children or for ourselves. They would no longer be able to call those of us who don't like our autism and wish to be cured of it "quislings". They would no longer be able to claim that they deserve to be on the board of directors of autism speaks because of the old "nothing about us without us" mantra. After all, it would no longer be about them.
I realize all of these scenarios are a pipe dream. Assuming that the DSM is in fact changed and Asperger's is eliminated as a diagnostic category (it may or may not be) they could still say that they are autistic. It is irrelevant that they never had a speech delay or the challenges that more severely autistic persons (even myself included) have had. This is what would probably happen if the DSM were changed, they would just call themselves autistic. They would even, according to the article itself, still be able to use the term Asperger's in the loose sense.
Of course, like Martin Luther King, I have a dream.
Monday, October 26, 2009
Everyone wants a cure for autism?
I see that the pharmaceutical company Pfizer has started a new autism unit devoted to trying to find drug treatments or possibly even a cure for autism. Diane Stephenson one of the Pfizer research associates who has started this unit has an autistic nephew who at age 23 has never spoken a word. She also has another younger nephew and niece who have autism, who are the children of another sibling of hers. This has motivated her to do research to find help for these individuals as well as others on the spectrum.
I found the following quote from the article particularly interesting:
"Everyone wants a cure,"(emphasis added) said Stephenson, who has worked at the Groton labs for six years. "I felt there was something I could do."
Apparently Ms. Stephenson has never heard of the neurodiversity movement. I wonder what this scientist who has a 23 year old autistic nephew who is completely nonverbal would say, if she discovered there is a cult of individuals who are opposed to curing autism. A cult who believes that to cure someone of this disease is stripping them of their humanity. Who teach 16 year old kids that wanting your loved ones to have the ability to speak who don't have it is "disgusting drivel". Who claim that parents of autistic children who want a cure for their children are like members of the Ku Klux Klan who are forced to raise black children. I wonder what Ms. Stephenson's reaction would be if she found out that a half million dollar grant was given by the major private sector funder of autism research to a man claiming the goal of curing autism is nonsensical, who also said that autism is not a dysfunction or disorder but merely a difference and has written that autism isn't harmful.
What would Ms. Stephenson think if she found out, an eminent experimental psychologist who gets extensive funding from the government has written that her nonverbal nephew needs acceptance and not a cure and that this psychologist claimed personal experience with autism by having a son with the condition. Unlike Ms. Stephenson's nonverbal nephew at 23, the psychologist's son is a high school senior at age 12.
I wonder what the Pfizer scientist would think if she found out that a 21-year-old kid with virtually no life experience was claiming that it was a myth that her nonverbal nephew had no hope and no future.
I can't imagine what her reaction (0r her nephew's) would be if she found out there was a group of people who claim the reason that some autistic people wish a cure for their condition is because their mother taught them to hate themselves.
Well, there is an old saying, ignorance is bliss.
I found the following quote from the article particularly interesting:
"Everyone wants a cure,"(emphasis added) said Stephenson, who has worked at the Groton labs for six years. "I felt there was something I could do."
Apparently Ms. Stephenson has never heard of the neurodiversity movement. I wonder what this scientist who has a 23 year old autistic nephew who is completely nonverbal would say, if she discovered there is a cult of individuals who are opposed to curing autism. A cult who believes that to cure someone of this disease is stripping them of their humanity. Who teach 16 year old kids that wanting your loved ones to have the ability to speak who don't have it is "disgusting drivel". Who claim that parents of autistic children who want a cure for their children are like members of the Ku Klux Klan who are forced to raise black children. I wonder what Ms. Stephenson's reaction would be if she found out that a half million dollar grant was given by the major private sector funder of autism research to a man claiming the goal of curing autism is nonsensical, who also said that autism is not a dysfunction or disorder but merely a difference and has written that autism isn't harmful.
What would Ms. Stephenson think if she found out, an eminent experimental psychologist who gets extensive funding from the government has written that her nonverbal nephew needs acceptance and not a cure and that this psychologist claimed personal experience with autism by having a son with the condition. Unlike Ms. Stephenson's nonverbal nephew at 23, the psychologist's son is a high school senior at age 12.
I wonder what the Pfizer scientist would think if she found out that a 21-year-old kid with virtually no life experience was claiming that it was a myth that her nonverbal nephew had no hope and no future.
I can't imagine what her reaction (0r her nephew's) would be if she found out there was a group of people who claim the reason that some autistic people wish a cure for their condition is because their mother taught them to hate themselves.
Well, there is an old saying, ignorance is bliss.
Sunday, October 25, 2009
Does neurodiversity give a s*** about Patrick Fuglei?
Gadfly has come back after a brief hiatus. I have found an interesting piece about bullying of an autistic that I thought I might weigh in on.
Whenever I state my views about neurodiversity, stating that I long for a cure (though I concede it is unlikely it will be found in my lifetime), disputing their social model of disability, refuting their lies such as that Vernon Smith and Richard Borcherds were ever diagnosed as being on the spectrum by clinicians, their claims that autistic people can do just fine with the right supports and Ari Ne'eman's claims in the despicable No Myths video that the prognosis for most persons on the spectrum is not poor, etc, the response from neurodiversity is quite predictable. I am bombarded by the strawman that because I am opposed to these notions that I am against human rights for persons with autism, that neurodiversity is nothing more than the idea that autistic lives are worthwhile and they are entitled to certain human rights.
Interestingly enough, though bullying is often a problem for those on the spectrum, at least during childhood and adolescence, myself included, I seldom hear anything about it from members of the ND movement. I usually hear the arguments about how vaccines don't cause autism, there has never been an autism epidemic, and how hateful it is for those to claim that they could possibly be "toxic". I also hear about what a horrible organization autism speaks is, what a horrible person Jon Shestack is for wanting to cure his son, who can't speak or dress himself or do anything without an aide.
How about bullying or other human rights violations that persons with autism have to endure? As the old lady in the Wendy's television commercial would say, "Where's the beef?"
Patrick Fuglei's case is an example of this. A boy who had no friends and is so anxious to fit in, he does not mind other kids calling him "retard". He has such poor social judgment that when students have told him he should tell a pretty girl how much he would like to see her naked he will do it. When taunted by other kids that he had a vagina, he was challenged to prove them wrong. He accepted the challenge, dropping his pants, showing them he had no vagina, right in the middle of the playground. This is really no different than rearranging the furniture in a blind person's home when you think about it. His parents attempted to mainstream him hoping that he could have a normal life as possible and be in a school with his non handicapped peers, but this did not work out. The teasing and taunts got so bad he had to leave the school (with the very ironic name of Hellgate) . He will be attending a special ed school for autistic persons in another state where his grandparents live. Seems sad that a kid like this has to live in a different state from his parents because his human rights have been ignored by everyone including those in the neurodiversity movement.
The article also states that Patrick wishes to be "normal". Apparently he is another autistic, who missed the neurodiversity polls in which they claimed most don't want to be cured.
This article does hit home with me. I had to end up going to a school outside of my school district because I was receiving so much bullying and harassment from other kids. This was after I left special school. Of course, it is a myth that special ed kids are not picked on by other special ed kids, so Patrick may be disappointed at his special ed placement.
One reason that the ND's don't care is that many of them are bullies themselves. It would seem anyone on the spectrum who desires a cure incurs their wrath and becomes a target. I have been the victim of internet bullying among a number of members of the autism hub which represents blogs where the neurodiversity bloggers congregate. Parents are bullied by the august bloggers Kowalski and Turner. I have written about these two unsavory characters previously. I have been told by Dave Seidel, one of the hub administrators, that membership in the hub requires consensus among all the bloggers in the hub. Therefore we can judge them by the company they keep. It would seem the hub denizens not only do not care about bullying but rather promote it.
I realize that it is possible that many of them were bullied themselves. This is probably not an uncommon phenomena. They were bullied and projected their anger onto others more vulnerable so they became bullies themselves.
If Ari Ne'eman, Dave Seidel, or Michelle Dawson or any other ND who claims their movement is about human rights happens to read this, how about Pat Fuglei, what about his human rights?
Whenever I state my views about neurodiversity, stating that I long for a cure (though I concede it is unlikely it will be found in my lifetime), disputing their social model of disability, refuting their lies such as that Vernon Smith and Richard Borcherds were ever diagnosed as being on the spectrum by clinicians, their claims that autistic people can do just fine with the right supports and Ari Ne'eman's claims in the despicable No Myths video that the prognosis for most persons on the spectrum is not poor, etc, the response from neurodiversity is quite predictable. I am bombarded by the strawman that because I am opposed to these notions that I am against human rights for persons with autism, that neurodiversity is nothing more than the idea that autistic lives are worthwhile and they are entitled to certain human rights.
Interestingly enough, though bullying is often a problem for those on the spectrum, at least during childhood and adolescence, myself included, I seldom hear anything about it from members of the ND movement. I usually hear the arguments about how vaccines don't cause autism, there has never been an autism epidemic, and how hateful it is for those to claim that they could possibly be "toxic". I also hear about what a horrible organization autism speaks is, what a horrible person Jon Shestack is for wanting to cure his son, who can't speak or dress himself or do anything without an aide.
How about bullying or other human rights violations that persons with autism have to endure? As the old lady in the Wendy's television commercial would say, "Where's the beef?"
Patrick Fuglei's case is an example of this. A boy who had no friends and is so anxious to fit in, he does not mind other kids calling him "retard". He has such poor social judgment that when students have told him he should tell a pretty girl how much he would like to see her naked he will do it. When taunted by other kids that he had a vagina, he was challenged to prove them wrong. He accepted the challenge, dropping his pants, showing them he had no vagina, right in the middle of the playground. This is really no different than rearranging the furniture in a blind person's home when you think about it. His parents attempted to mainstream him hoping that he could have a normal life as possible and be in a school with his non handicapped peers, but this did not work out. The teasing and taunts got so bad he had to leave the school (with the very ironic name of Hellgate) . He will be attending a special ed school for autistic persons in another state where his grandparents live. Seems sad that a kid like this has to live in a different state from his parents because his human rights have been ignored by everyone including those in the neurodiversity movement.
The article also states that Patrick wishes to be "normal". Apparently he is another autistic, who missed the neurodiversity polls in which they claimed most don't want to be cured.
This article does hit home with me. I had to end up going to a school outside of my school district because I was receiving so much bullying and harassment from other kids. This was after I left special school. Of course, it is a myth that special ed kids are not picked on by other special ed kids, so Patrick may be disappointed at his special ed placement.
One reason that the ND's don't care is that many of them are bullies themselves. It would seem anyone on the spectrum who desires a cure incurs their wrath and becomes a target. I have been the victim of internet bullying among a number of members of the autism hub which represents blogs where the neurodiversity bloggers congregate. Parents are bullied by the august bloggers Kowalski and Turner. I have written about these two unsavory characters previously. I have been told by Dave Seidel, one of the hub administrators, that membership in the hub requires consensus among all the bloggers in the hub. Therefore we can judge them by the company they keep. It would seem the hub denizens not only do not care about bullying but rather promote it.
I realize that it is possible that many of them were bullied themselves. This is probably not an uncommon phenomena. They were bullied and projected their anger onto others more vulnerable so they became bullies themselves.
If Ari Ne'eman, Dave Seidel, or Michelle Dawson or any other ND who claims their movement is about human rights happens to read this, how about Pat Fuglei, what about his human rights?
Wednesday, October 14, 2009
AS board member gives take about autistics on the board
One of the controversies that the neurodiversity movement has brought to the forefront in the past is the question of why autism speaks' board of directors does not include someone on the spectrum themselves. They feel that the name of the organization is ironic in that it disenfranchises those with autism for that reason.
When various persons, mostly neurodiversity believing persons on the spectrum, complained about this, I suggested that they contact autism speaks and ask them why there were no board members with autism. At the time, as far as I knew, AS had never been contacted and asked this question. Janet Norman Bain (AKA Jypsy) wrote a comment on autism's gadfly stating that she had in fact sent AS email asking them the question, and had only received a curt form email thanking her for sending them the email and had never directly received a reply. Michelle Dawson also stated that she had asked officials at autism speaks the question and they had just stated they were happy without any board members on the spectrum. Michelle then seemed to imply that I was giving inaccurate information, though I had no way of knowing either Jypsy or Michelle had asked this question.
Mike Stanton took my advice and sent an email asking autism speaks this question. Apparently they never answered him either. Both Jypsy and Mike seemed to think the onus was on me to dig up the answer because I had blogged about it. I respectfully disagreed, but told them that I occasionally ran into Jon Shestack and Portia Iversen at certain autism-related things and although I did not know them very well, if I ever saw them again I would ask, but not go out of my way to find out. I told them if I ever got a response that I would post it here on autism's gadfly.
I recently wrote a post about one spectrumite who seemed he might be a candidate for the board of directors of AS in the foreseeable future. As luck would have it, Jon Shestack read this blog entry and weighed in about the question of persons with autism (at least those with an ND perspective) serving on the board. In case Mike and Jypsy have not read the comment by Mr. Shestack, I feel that I should print it here in order to keep my promise to them. Given that Mr. Shestack is a member of the board himself, what he said may be of interest:
I recognize that ND folks has real issues. Humiliations and unfairnesses abound. But they help no one by going on the board of mainstream autism organizations. These organizations are set up to help people who are fundamentally different. Who are for the most part dependent on others. Who can not get married, communicate, or perform useful work unaided.What the mainstream autism organizations need is to make sure that actual parents and siblings, people with firsthand exposure to the disorder and who also have real credentials as activists are represented in the decision making process, particularly the scientific funding process. AS and Simons run the risk of becoming like NIH, institutional echo chambers where new ideas get drowned out by the old voices.The ND activists have no desire to foster research and they should stay away from organizations where that is the main goal. But they do seem very concerned with rights and perception, and I feel that they have had a great influence in these areas very quickly. It would be great to see the ND community coalesce and concentrate on those issues and not muddy the waters and inflict emotional hurt on those families that are desperately searching for a cure and a better life for their children.
I disagreed with Jon's statement about the ND's not being interested in scientific research and pointed out the nearly half million dollar grant that AS had recently given Laurent Mottron and the persons who work with him. Though I agreed it would be a laudable goal for ND just to concentrate on human rights and dignity for persons with autism and not inflict abuse on families wishing for a cure and a better life for autistic children I pointed out to him that this is quite unrealistic.
Other than these two points of contention, this seemed like quite a good response to me. It also seemed quite a magnanimous response on his part, considering in the days before Allison Tepper Singer this man (and possibly his wife) has received more vilification than any other autism figure. He has been called a Nazi, Hitler incarnate and autism diva once called him "a spoiled Hollywood type".
One of the reasons that ND may have expressed an interest in a position on the AS board is they believe this will give them some power. Roger Kulp seemed to think that ND was trying to take over autism speaks by infiltration. As far as Roger's notion being accurate and whether or not Mike Carley would be able to sway AS to an ND agenda, Mr. Shestack again gave his input.
As for the notion that the ND people will take over As through infiltration, surely you jest. I founded CAN and the Autism Genetic Resource Exchange, and helped get the children's health act passed and am on the executive committee of AS and I have had a minimal bordering on nonexistent effect on its policy.
As for being a member of the AS board, membership for Mr Carley will not advance the ND position or Mr Carley personally. Though he will certainly be asked to fundraise.
Though I realize that this does not give an out and out answer to the question of why there are no autistics on the board of directors of autism speaks, it does partially answer it I believe. If others in power at AS feel the same way as Mr. Shestack does then perhaps, they feel that having an autistic (at least one with an ND perspective) does not help their organization as they have different goals and he feels these people aren't helping themselves either.
It would also seem that being on the board of directors does not wield the power that persons who have asked about that seem to think it does. Jonathan Shestack is certainly in a position to know as well or better than anyone else. Instead an ND board member on the spectrum would be asked to engage in what would probably be to them the drudgery of having to get money into the organization and not reaping what they perceive as the benefits. So ND again might be careful what they wish for.
This is the best response to this question I have been able to get so far. If any other breakthroughs are made I will post about them on autism's gadfly. I hope Jon Shestack won't mind my bringing attention to him in this post and printing out his comments from another post.
When various persons, mostly neurodiversity believing persons on the spectrum, complained about this, I suggested that they contact autism speaks and ask them why there were no board members with autism. At the time, as far as I knew, AS had never been contacted and asked this question. Janet Norman Bain (AKA Jypsy) wrote a comment on autism's gadfly stating that she had in fact sent AS email asking them the question, and had only received a curt form email thanking her for sending them the email and had never directly received a reply. Michelle Dawson also stated that she had asked officials at autism speaks the question and they had just stated they were happy without any board members on the spectrum. Michelle then seemed to imply that I was giving inaccurate information, though I had no way of knowing either Jypsy or Michelle had asked this question.
Mike Stanton took my advice and sent an email asking autism speaks this question. Apparently they never answered him either. Both Jypsy and Mike seemed to think the onus was on me to dig up the answer because I had blogged about it. I respectfully disagreed, but told them that I occasionally ran into Jon Shestack and Portia Iversen at certain autism-related things and although I did not know them very well, if I ever saw them again I would ask, but not go out of my way to find out. I told them if I ever got a response that I would post it here on autism's gadfly.
I recently wrote a post about one spectrumite who seemed he might be a candidate for the board of directors of AS in the foreseeable future. As luck would have it, Jon Shestack read this blog entry and weighed in about the question of persons with autism (at least those with an ND perspective) serving on the board. In case Mike and Jypsy have not read the comment by Mr. Shestack, I feel that I should print it here in order to keep my promise to them. Given that Mr. Shestack is a member of the board himself, what he said may be of interest:
I recognize that ND folks has real issues. Humiliations and unfairnesses abound. But they help no one by going on the board of mainstream autism organizations. These organizations are set up to help people who are fundamentally different. Who are for the most part dependent on others. Who can not get married, communicate, or perform useful work unaided.What the mainstream autism organizations need is to make sure that actual parents and siblings, people with firsthand exposure to the disorder and who also have real credentials as activists are represented in the decision making process, particularly the scientific funding process. AS and Simons run the risk of becoming like NIH, institutional echo chambers where new ideas get drowned out by the old voices.The ND activists have no desire to foster research and they should stay away from organizations where that is the main goal. But they do seem very concerned with rights and perception, and I feel that they have had a great influence in these areas very quickly. It would be great to see the ND community coalesce and concentrate on those issues and not muddy the waters and inflict emotional hurt on those families that are desperately searching for a cure and a better life for their children.
I disagreed with Jon's statement about the ND's not being interested in scientific research and pointed out the nearly half million dollar grant that AS had recently given Laurent Mottron and the persons who work with him. Though I agreed it would be a laudable goal for ND just to concentrate on human rights and dignity for persons with autism and not inflict abuse on families wishing for a cure and a better life for autistic children I pointed out to him that this is quite unrealistic.
Other than these two points of contention, this seemed like quite a good response to me. It also seemed quite a magnanimous response on his part, considering in the days before Allison Tepper Singer this man (and possibly his wife) has received more vilification than any other autism figure. He has been called a Nazi, Hitler incarnate and autism diva once called him "a spoiled Hollywood type".
One of the reasons that ND may have expressed an interest in a position on the AS board is they believe this will give them some power. Roger Kulp seemed to think that ND was trying to take over autism speaks by infiltration. As far as Roger's notion being accurate and whether or not Mike Carley would be able to sway AS to an ND agenda, Mr. Shestack again gave his input.
As for the notion that the ND people will take over As through infiltration, surely you jest. I founded CAN and the Autism Genetic Resource Exchange, and helped get the children's health act passed and am on the executive committee of AS and I have had a minimal bordering on nonexistent effect on its policy.
As for being a member of the AS board, membership for Mr Carley will not advance the ND position or Mr Carley personally. Though he will certainly be asked to fundraise.
Though I realize that this does not give an out and out answer to the question of why there are no autistics on the board of directors of autism speaks, it does partially answer it I believe. If others in power at AS feel the same way as Mr. Shestack does then perhaps, they feel that having an autistic (at least one with an ND perspective) does not help their organization as they have different goals and he feels these people aren't helping themselves either.
It would also seem that being on the board of directors does not wield the power that persons who have asked about that seem to think it does. Jonathan Shestack is certainly in a position to know as well or better than anyone else. Instead an ND board member on the spectrum would be asked to engage in what would probably be to them the drudgery of having to get money into the organization and not reaping what they perceive as the benefits. So ND again might be careful what they wish for.
This is the best response to this question I have been able to get so far. If any other breakthroughs are made I will post about them on autism's gadfly. I hope Jon Shestack won't mind my bringing attention to him in this post and printing out his comments from another post.
Tuesday, October 13, 2009
yet another dies at autism's hand
I see that once again neurodiversity has gotten it wrong and yet another has died at autism's hand. Again we see further evidence refuting their argument that no cure should be found for autism because autism does not kill anyone. Again, those people who mourned Katie McCarron's murder will shed no tears for Devine Farrier.
Friday, October 9, 2009
Autism genetics: Is Temple Grandin keeping a secret?
I have read with interest Mark Blaxill's recent take on some new genetic findings that have been published on autism. I have also read Alan Griswold's brief take on Blaxill's take. Blaxill has written about the problems with genetic research in autism previously as well. Blaxill points out that there have been failures of science to replicate findings in genetic research in autism.
Assuming that Blaxill's arguments are at all valid, this does not really jive with the thinking of Temple Grandin, probably the most prominent of autistic persons. She has said that getting rid of autism genes would hurt society Grandin states:
I would think in an ideal world, you don't want to have people who cant talk, but on the other hand, you definitely don't want to get rid of all of the autism genetics becvause if you did that, there'd be no scientists. After all, who do you think made the first stone spear back in the caves? It wasn't the really social people.
So, in other words, the fact that I have to suffer from an incurable disorder/disease is necessary to society. Dov Shestack and John Belmonte and other completely nonverbal autistics are making a great noble sacrifice for the betterment of society. There may be some problems with this argument. There so far has not been a unifying finding on autism genetics. Blaxill's piece may point that out. A variety of different chromosomes and genes have been implicated in autism. autosomes as well as x chromosomes. Various types of inheritance, both autosomal dominance in the case of autism caused by tuberous sclerosis as well as multiplex genes, given the fact that the rate of concordance among siblings, while higher than in the general population is lower in identical twins. So we have to wonder if autism genes are responsible for all scientific endeavors as Grandin alleges, then which gene or genes is it? Which chromosome are these genes on? Are they autosomal genes or sex genes? Are the genetic mutations the result of duplications, or deletions of amino acids? I have written about the problems with Grandin's logic elsewhere
Perhaps Grandin has some sort of omniscience about the genetics of autism that the rest of us don't have. Pray tell us, Dr. Grandin, what is the genetic etiology of autism that you are keeping a secret from us. Furthermore, since you know what genes contribute to scientific endeavor, perhaps, science can find a way to enhance these genes in ordinary people who might not have the natural stuff to be great scientists. Even more scientific discoveries could be made, a cure for cancer, a way to rid ourselves of dependence on foreign oil, and a way to end pollution.
I wish Temple would let me in on her little secret.
Assuming that Blaxill's arguments are at all valid, this does not really jive with the thinking of Temple Grandin, probably the most prominent of autistic persons. She has said that getting rid of autism genes would hurt society Grandin states:
I would think in an ideal world, you don't want to have people who cant talk, but on the other hand, you definitely don't want to get rid of all of the autism genetics becvause if you did that, there'd be no scientists. After all, who do you think made the first stone spear back in the caves? It wasn't the really social people.
So, in other words, the fact that I have to suffer from an incurable disorder/disease is necessary to society. Dov Shestack and John Belmonte and other completely nonverbal autistics are making a great noble sacrifice for the betterment of society. There may be some problems with this argument. There so far has not been a unifying finding on autism genetics. Blaxill's piece may point that out. A variety of different chromosomes and genes have been implicated in autism. autosomes as well as x chromosomes. Various types of inheritance, both autosomal dominance in the case of autism caused by tuberous sclerosis as well as multiplex genes, given the fact that the rate of concordance among siblings, while higher than in the general population is lower in identical twins. So we have to wonder if autism genes are responsible for all scientific endeavors as Grandin alleges, then which gene or genes is it? Which chromosome are these genes on? Are they autosomal genes or sex genes? Are the genetic mutations the result of duplications, or deletions of amino acids? I have written about the problems with Grandin's logic elsewhere
Perhaps Grandin has some sort of omniscience about the genetics of autism that the rest of us don't have. Pray tell us, Dr. Grandin, what is the genetic etiology of autism that you are keeping a secret from us. Furthermore, since you know what genes contribute to scientific endeavor, perhaps, science can find a way to enhance these genes in ordinary people who might not have the natural stuff to be great scientists. Even more scientific discoveries could be made, a cure for cancer, a way to rid ourselves of dependence on foreign oil, and a way to end pollution.
I wish Temple would let me in on her little secret.
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