In the better late than never department, I've decided to give a point by point rebuttal to a speech given at IMFAR by one of neurodiversity's most prominent proponents, John Elder Robison.
Again, Robison uses the 1 in 68 figure for autism prevalence so frequently misrepresented by autism advocates and media pundits. He claims to have served on the NIH and CDC committees that discussed the formulation of research at how those numbers were arrived at, yet is woefully ignorant of what those numbers actually mean (assuming he's not outright dishonest). He writes that this means there are more persons with autism than Jews, Japanese Americans and that these numbers show that there are more autistic people than anyone every realized. As I've mentioned in a previous post. The 1 in 68 number was based on just one survey the CDC did in various select parts of the United States. There was a huge range of numbers in various parts of the United States with Alabama being by far the lowest and New Jersey and Utah being much higher. The number only applied to persons born in the year 2002. Anyone who reads the CDC report itself will see the 1 in 68 kids were not formally assessed. If there was something in a school record suggesting the child had autism they were counted in the survey without a diagnosis.
Robison makes the apples and hurricanes comparison between who should advocate for Jewish people or native Americans with who should advocate for autistics, stating autistics themselves. Yet autism is a disease/disability of childhood and though there are autistic adults many autistic people are still children so in the meantime their parents advocate for them. To date, five individuals purported to be on the spectrum have served on the IACC. All of them have opposed curing autism. Not one person on the spectrum who is in favor of a cure or finding treatments to alleviate autism has been appointed, in spite of the fact that Roger Kulp has expressed an interest in the position. At one time, Robison claimed to be in favor of research to "remediate" the debilitating aspects of autism (whatever that means). Since he's left the science advisory board of autism speaks, his views have become far more radically neurodiverse (I don't know if this is coincidence or not) and he now states that the disabling aspects of autism are largely a construct of society and if the correct accommodations were made autism would not be a disability. He claims that 1 in 68 persons had autism in the 19th century and before, but somehow they escaped detection as society was so different, yet fails to explain, how someone who could not speak, threw a temper tantrum and was totally impaired from self-stimulation would have been able to hold a job as a blacksmith for example.
Let me make an analogy to counter Robison's. As far as I know, we don't have a public citizen member board of the federal government for cancer, diabetes, schizophrenia or any other disease you could name. We certainly don't have someone who did not complete the tenth grade in school serve on any of those boards. Steven Jobs was a highly talented individual who contributed great innovations to society. He was afflicted with pancreatic cancer yet did not serve on any scientific advisory boards to find treatments for cancer. People with infections don't serve on boards to treat antibiotics. If Robison can name me any Ph.D. scientist on the spectrum who is capable of doing research to help autism, then maybe i'll buy at least part of his argument and I would support that person in their endeavors if it would help find a cure.
Robison states that people saying they want a cure for autism is a slap in the face for everyone who celebrates the gifts autism gives us, but fails to mention any. I feel Robison's speech and his anti-cure rhetoric are a slap in the face to me and any other individual who wishes their autism or loved one's autism could be cured including me.
He states that everyone who has autism suffers. Well, John, I have news for you. Every human being, autistic and non-autistic, handicapped and non-handicapped has suffered. It would be an anomolous human being who has not suffered. He cites some of the health problems that autistics have including suicide or depression and claims he's at risk for them every day. For him to imply he has any of the problems a typical person with autism has is ludicrous. It is highly unlikely someone of his functioning level would be at risk for the same types of health problems others on the spectrum are. That is assuming Robison is on the spectrum at all. I'm still trying to understand how someone who has stated they have no disability at all merits a diagnosis.
Robison admits that he has never experienced what it is like for a person not to be able to speak. Well, I experienced it, though I don't specifically remember what it is like. I did not recover my speech until close to age five, but I was still nonverbal.
Robison defends individuals on the spectrum who claim the word cure equates with getting rid of autistic people and says we should not take that attitude because they would be offended by it. Well, I'm offended by Robison's attitude and their attitude. If someone is so irrational they actually believe that curing a neurologic condition means getting rid of people that is their problem and I hope no scientist will take what Robison says on that matter seriously.
It is indeed unfortunate that IMFAR, an organization that should be devoted to research on how to mitigate and ultimately cure autism would give this individual a platform on which to speak.
Sunday, May 25, 2014
Thursday, May 22, 2014
Barack Obama, you sure do have your nerve
On reading Manuel Casanova's Cortical Chauvinism blog today, I see that Barack Obama has written a letter concerning autism. Here's the letter, addressed to attendees of the International Meeting for Autism Research, in full:
The White House Washington May 7, 2014
I send greeting to all those attending the International Meeting for Autism Research (IMFAR). Millions around the world live on the autism spectrum, including 1 out of every 68 American children. Those affected are our family members and friends, colleagues and neighbors. We all can play a roe in supporting those living on the autism spectrum and their loved ones. Occasions like the IMFAR provide a special opportunity to share the latest findings in the science of autism, which have the potential to improve the quality of life for those with autism. By uniting researchers from across the globe, events like this pave the way for breakthroughs in detection, intervention, and education that can help those affected better prepare for their bright future. I thank the scientists and medical professionals advancing our understanding of the autism spectrum. I am deeply grateful to all those who dedicate themselves to promoting the health and well-being of others, and I wish everyone gathered all the best for a productive, rewarding event.
Barack Obama
All I can say to the POTUS in response to this letter is that he sure does have his nerve writing this.
First off, the 1 out of 68 of every American children is an inaccurate statement. That number only refers to the year 2002 birth cohort that the CDC's prevalence reports recently published. Even in this cohort, it is highly unlikely that every one of those kids was autistic. They did not have to have a formal diagnosis to be counted in this survey. A variety of records were reviewed, including school records. If there was anything that suggested the child had autism, they were counted in the survey. They did not enlist clinicians to confirm the child had autism.
The really nervy thing about this letter is the fact that Mr. Obama has appointed so many members of the neurodiversity movement to various government posts and the funding of their research. He appointed someone 21 years old who has said a cure for autism would be morally reprehensible. This individual has never worked a day in his life and he stated that one of the solutions for reducing unemployment in autistics is to eliminate social pleasantry as a criteria for hiring and evaluating a person's job performance. He appointed a high school dropout to both serve on the IACC as well as review scientific grants for the NIMH. This person has said that to a large extent the disability of autism is just a social construct. He also stated that he believes the 4:1 male to female ratio of autistics is the result of parents having sons as their first borns and daughters not having a chance to catch up. He's also appointed an individual who has compared parents who want a cure for autism to the Ku Klux Klan.
He funds the research of rogue scientist Morton Gernsbacher who has opposed a cure for autism and has stated that rhetoric such as 'suffering from autism' is offensive
Barack Obama, I realize you'll never read this, but I just want to say to anyone who may happen to read this you sure do have a lot of nerve writing this letter. You don't care that many persons on the spectrum such as myself and members of their families suffer tremendously from this affliction.
The White House Washington May 7, 2014
I send greeting to all those attending the International Meeting for Autism Research (IMFAR). Millions around the world live on the autism spectrum, including 1 out of every 68 American children. Those affected are our family members and friends, colleagues and neighbors. We all can play a roe in supporting those living on the autism spectrum and their loved ones. Occasions like the IMFAR provide a special opportunity to share the latest findings in the science of autism, which have the potential to improve the quality of life for those with autism. By uniting researchers from across the globe, events like this pave the way for breakthroughs in detection, intervention, and education that can help those affected better prepare for their bright future. I thank the scientists and medical professionals advancing our understanding of the autism spectrum. I am deeply grateful to all those who dedicate themselves to promoting the health and well-being of others, and I wish everyone gathered all the best for a productive, rewarding event.
Barack Obama
All I can say to the POTUS in response to this letter is that he sure does have his nerve writing this.
First off, the 1 out of 68 of every American children is an inaccurate statement. That number only refers to the year 2002 birth cohort that the CDC's prevalence reports recently published. Even in this cohort, it is highly unlikely that every one of those kids was autistic. They did not have to have a formal diagnosis to be counted in this survey. A variety of records were reviewed, including school records. If there was anything that suggested the child had autism, they were counted in the survey. They did not enlist clinicians to confirm the child had autism.
The really nervy thing about this letter is the fact that Mr. Obama has appointed so many members of the neurodiversity movement to various government posts and the funding of their research. He appointed someone 21 years old who has said a cure for autism would be morally reprehensible. This individual has never worked a day in his life and he stated that one of the solutions for reducing unemployment in autistics is to eliminate social pleasantry as a criteria for hiring and evaluating a person's job performance. He appointed a high school dropout to both serve on the IACC as well as review scientific grants for the NIMH. This person has said that to a large extent the disability of autism is just a social construct. He also stated that he believes the 4:1 male to female ratio of autistics is the result of parents having sons as their first borns and daughters not having a chance to catch up. He's also appointed an individual who has compared parents who want a cure for autism to the Ku Klux Klan.
He funds the research of rogue scientist Morton Gernsbacher who has opposed a cure for autism and has stated that rhetoric such as 'suffering from autism' is offensive
Barack Obama, I realize you'll never read this, but I just want to say to anyone who may happen to read this you sure do have a lot of nerve writing this letter. You don't care that many persons on the spectrum such as myself and members of their families suffer tremendously from this affliction.
Monday, May 19, 2014
John Elder Robison's take on 1 in 68
I see that one of my favorite autism authors John Elder Robison is at it again with his latest foray into insights on autism, giving his take on the 1 in 68 number. Robison writes that this means that autistic people are now more numerous than native americans, Jews, and Japanese immigrants and makes a comparison between the struggles of those groups and people with autism.
This statement might be factually correct if the 1 in 68 number applied to all people living today or let's say people born between 1933, the year when first people diagnosed with autism were born, and 2010,when a child's autistic symptoms might manifest themselves at the age of approximately 36 months
Robison conveniently omits the fact the 1 in 68 figure comes from a prevalence study done by the CDC applying to one birth cohort, people born in the year 2002. The figures from previous birth years are less. Also the 1 in 68 figure is an average of a variety of different sites where data was taken from various parts of the country. There are huge differences in prevalence in Utah and New Jersey as compared to Alabama for instance.
In fairness to JER though, I will concede he is not the only individual who makes this statement. The number is repeatedly misrepresented in the popular media and among autism advocates. He's not the only one who flippantly quotes this figure to play fast and fancy with the facts. However, I feel Robison is in a different class as he is one of the few select representatives on the IACC who advises the federal government on autism policy. He has also been appointed to review grants for the NIMH. I could also give his, at one time, being on the scientific advisory board of Autism Speaks, but fortunately he's already tendered his resignation from that position.
He goes on to state that Studies (emphasis on plural added) show that the same numbers are present in adult populations of those on the spectrum. As is par for the course from him, he neglects to cite any specific examples. As far as I know, the only study on adults coming close to that is Terry Bruga's study in the UK which suggested a 1 in 100 prevalence number. The study had a questionable methodology and was based on only about 19 people who allegedly had a formerly diagnosed spectrum disorder. Robison uses the plural Studies, not study, so I presume there is at least one other study that he's aware of and I'm not, but fails to mention in the piece. I'm very curious as to what other study, if any, showed a 1 in 100 prevalence in adults if any. Since Bruga's study only applied to the UK and not to the USA, there is still not a single study that I know of showing adult prevalence in this country where the 1 in 68 figure for children born in 2002 comes from so, the comparison of the British and American figures may be apples and oranges.
Robison also goes on to write:
We used to think most autistic people were intellectually disabled. That narrow view was based on a limited understanding of what autism really is. As our knowledge grows we recognize more people whose intelligence is in the normal range, and some whose IQ is exceptional. The more autistics we identify, the closer our community’s distribution of intelligence comes to that of the general population.
This statement is not technically completely false, but leads one to believe that the majority of autistics diagnosed nowadays are of average or higher intelligence as measured by IQ tests. Lets look at the CDC data compiled on six different birth cohorts in the last fourteen years. In the 1 in 68 study that Robison cites, 31% of the children had IQ's below 70. In the six birth cohorts in the CDC's ADDM data, in previous years the percentage of children with IQ lower than 70 were 43, 44.6, 44, 41, 38, and 31%. So severe intellectual disability in autistics was relatively stable up until the 2002 birth cohort when it significantly dropped but not by a really huge amount.
The first birth cohort for which figures are available for IQs above 85 there is a range of 40-62% in the first birth cohort, 33-59% in the second, 38-63% in the third 29-51% in the fourth, 38% in the fifth. In the latest birth cohort, there was a significant jump to 46%, but still not a huge increase. These numbers merely represent an average of the large range between the various sites in the ADDM studies and not a uniform number for all sites. This does not include percentages of autistics with IQs in the 70-84 range. I'm not sure what the figures are of people in the 85-99 range which would still be lower than average intelligence since the median IQ of the general population is 100, which means that 50% of all people have an IQ >100. So, though the autistic's intelligence has come somewhat closer to that of the general NT population the increase was not much greater than negligible.
After this point, Robison's piece becomes much more interesting. He compares autistic people with minorities.
Robison again uses the "royal we" that Harold Doherty has frequently written about:
As we form a community identity we are beginning to take control of our destiny. Some of us are assertive; others are angry. Some are meek but that’s changing. We’re speaking out. We’re getting a better handle on the broad range of supports and services we need to live in this society. We’re finally recognizing the needs of adults and older autistics. More and more, we’re speaking up and expressing our needs in education, medicine, workplace accommodation, and public policy.
Robison neglects to explain what reasonable accommodations autistics could receive in the workplace under ADA that would help.
Starting with the next sentence, the article becomes much better as Robison takes a page out of Ari Ne'eman's book if not outright plagarizing him:
we’re realizing that a lot of our presumed disability is a construct of modern society.
Apparently Robison is becoming even more extreme in his neurodiverse philosophy. At one time, he apparently believed in doing research to "remediate the disabling aspects of autism" though he was opposed to a cure. Now he's claiming to a great degree that autism is not really a disability in itself, but to a large degree only society makes it so. Does this mean that the remedies he's proposing are similar to ASAN's?
The answer is yes. Robison, in the most interesting part of the article yet, goes on to state that the reason autistics weren't identified previously was that 100 years ago or so, society was completely different. Autistics got along just fine in society and blended in and worked just the same way neurotypical people did. Robison, steals more of Ari Ne'eman's and ASAN's thunder by claiming that if society could only change, our educational system and apprenticing people for work they way they did in less modern times autistics could get along just fine and work and marry just like everyone else and now it is up to society to change and not autistics themselves.
Aside from the fact, this argument does not give an explanation of the 4/10,000 number that existed for the 1980s there are other things about this argument that make little sense (but perhaps make dollars for Robison on his speaking engagements and book sales).
Robison's arguments might be logical if he were discussing dyslexics who lived in a hunting and gathering society hundreds of years ago or in the present day in the African congo or aboriginal Australia. They probably would not need to know how to read to survive in such a society, but would have been less successful in a 20th century society where reading is mandatory. However, how logical is this argument for autism?
I don't know if the prevalence of autism in the nineteenth century and earlier was the same as it is now. I do know that society would have been the same socially. That outbursts and behavioral issues would not have been more leniently tolerated. That autistics would still have had the same problems learning to do things as non-handicapped people. I wonder how people who were completely nonverbal could have managed prior to the twentieth century. They would have clearly been impaired. They would not have fit in any better. They would not have been able to be blacksmiths or hunters or gatherers.
Social unpleasantry would have been just as much a problem in those days as in the present time. Employers would have fired autistic people because they did not like their behavior just the same.
Robison has been quite vague as to how autistic people could be accommodated under ADA (which bars unreasonable accommodations, including putting up with social unpleasantry). The motor problems and meltdowns would have been just as bad if someone were trying to be a whip and buggy manufacturer in the days prior to automobiles.
He goes on to say the rest of the 98% need us because someone with autism invented calculus, apparently implying that Isaac Newton and anyone else who may have invented calculus was autistic. He also states the person who invented pokemon was autistic, but I find that hard to believe also.
Since he's resigned from the science board of autism speaks, Robison's views seem to have shifted radically to someone far more neurodiverse. At one time, he acknowledged that autism was a disability that needed remediating through scientific research. Now he's stated that disability is largely a social construct that can be remedied by societal accommodations. I wonder if he always felt this way and now that being on the board of autism speaks did not work out for him that he no longer has to make politically correct statements to appease a certain subset of persons interested in autism. Of course, I don't know the answer to that.
Once again, I thank John Robison for writing such an interesting article. At the end of the piece he states: A new day is dawning for our community
Yes, it already has, neurodiversity has taken over and has complete credibility and pro-cure people, particularly pro-cure autistics are scoffed and ridiculed.
This statement might be factually correct if the 1 in 68 number applied to all people living today or let's say people born between 1933, the year when first people diagnosed with autism were born, and 2010,when a child's autistic symptoms might manifest themselves at the age of approximately 36 months
Robison conveniently omits the fact the 1 in 68 figure comes from a prevalence study done by the CDC applying to one birth cohort, people born in the year 2002. The figures from previous birth years are less. Also the 1 in 68 figure is an average of a variety of different sites where data was taken from various parts of the country. There are huge differences in prevalence in Utah and New Jersey as compared to Alabama for instance.
In fairness to JER though, I will concede he is not the only individual who makes this statement. The number is repeatedly misrepresented in the popular media and among autism advocates. He's not the only one who flippantly quotes this figure to play fast and fancy with the facts. However, I feel Robison is in a different class as he is one of the few select representatives on the IACC who advises the federal government on autism policy. He has also been appointed to review grants for the NIMH. I could also give his, at one time, being on the scientific advisory board of Autism Speaks, but fortunately he's already tendered his resignation from that position.
He goes on to state that Studies (emphasis on plural added) show that the same numbers are present in adult populations of those on the spectrum. As is par for the course from him, he neglects to cite any specific examples. As far as I know, the only study on adults coming close to that is Terry Bruga's study in the UK which suggested a 1 in 100 prevalence number. The study had a questionable methodology and was based on only about 19 people who allegedly had a formerly diagnosed spectrum disorder. Robison uses the plural Studies, not study, so I presume there is at least one other study that he's aware of and I'm not, but fails to mention in the piece. I'm very curious as to what other study, if any, showed a 1 in 100 prevalence in adults if any. Since Bruga's study only applied to the UK and not to the USA, there is still not a single study that I know of showing adult prevalence in this country where the 1 in 68 figure for children born in 2002 comes from so, the comparison of the British and American figures may be apples and oranges.
Robison also goes on to write:
We used to think most autistic people were intellectually disabled. That narrow view was based on a limited understanding of what autism really is. As our knowledge grows we recognize more people whose intelligence is in the normal range, and some whose IQ is exceptional. The more autistics we identify, the closer our community’s distribution of intelligence comes to that of the general population.
This statement is not technically completely false, but leads one to believe that the majority of autistics diagnosed nowadays are of average or higher intelligence as measured by IQ tests. Lets look at the CDC data compiled on six different birth cohorts in the last fourteen years. In the 1 in 68 study that Robison cites, 31% of the children had IQ's below 70. In the six birth cohorts in the CDC's ADDM data, in previous years the percentage of children with IQ lower than 70 were 43, 44.6, 44, 41, 38, and 31%. So severe intellectual disability in autistics was relatively stable up until the 2002 birth cohort when it significantly dropped but not by a really huge amount.
The first birth cohort for which figures are available for IQs above 85 there is a range of 40-62% in the first birth cohort, 33-59% in the second, 38-63% in the third 29-51% in the fourth, 38% in the fifth. In the latest birth cohort, there was a significant jump to 46%, but still not a huge increase. These numbers merely represent an average of the large range between the various sites in the ADDM studies and not a uniform number for all sites. This does not include percentages of autistics with IQs in the 70-84 range. I'm not sure what the figures are of people in the 85-99 range which would still be lower than average intelligence since the median IQ of the general population is 100, which means that 50% of all people have an IQ >100. So, though the autistic's intelligence has come somewhat closer to that of the general NT population the increase was not much greater than negligible.
After this point, Robison's piece becomes much more interesting. He compares autistic people with minorities.
Robison again uses the "royal we" that Harold Doherty has frequently written about:
As we form a community identity we are beginning to take control of our destiny. Some of us are assertive; others are angry. Some are meek but that’s changing. We’re speaking out. We’re getting a better handle on the broad range of supports and services we need to live in this society. We’re finally recognizing the needs of adults and older autistics. More and more, we’re speaking up and expressing our needs in education, medicine, workplace accommodation, and public policy.
Robison neglects to explain what reasonable accommodations autistics could receive in the workplace under ADA that would help.
Starting with the next sentence, the article becomes much better as Robison takes a page out of Ari Ne'eman's book if not outright plagarizing him:
we’re realizing that a lot of our presumed disability is a construct of modern society.
Apparently Robison is becoming even more extreme in his neurodiverse philosophy. At one time, he apparently believed in doing research to "remediate the disabling aspects of autism" though he was opposed to a cure. Now he's claiming to a great degree that autism is not really a disability in itself, but to a large degree only society makes it so. Does this mean that the remedies he's proposing are similar to ASAN's?
The answer is yes. Robison, in the most interesting part of the article yet, goes on to state that the reason autistics weren't identified previously was that 100 years ago or so, society was completely different. Autistics got along just fine in society and blended in and worked just the same way neurotypical people did. Robison, steals more of Ari Ne'eman's and ASAN's thunder by claiming that if society could only change, our educational system and apprenticing people for work they way they did in less modern times autistics could get along just fine and work and marry just like everyone else and now it is up to society to change and not autistics themselves.
Aside from the fact, this argument does not give an explanation of the 4/10,000 number that existed for the 1980s there are other things about this argument that make little sense (but perhaps make dollars for Robison on his speaking engagements and book sales).
Robison's arguments might be logical if he were discussing dyslexics who lived in a hunting and gathering society hundreds of years ago or in the present day in the African congo or aboriginal Australia. They probably would not need to know how to read to survive in such a society, but would have been less successful in a 20th century society where reading is mandatory. However, how logical is this argument for autism?
I don't know if the prevalence of autism in the nineteenth century and earlier was the same as it is now. I do know that society would have been the same socially. That outbursts and behavioral issues would not have been more leniently tolerated. That autistics would still have had the same problems learning to do things as non-handicapped people. I wonder how people who were completely nonverbal could have managed prior to the twentieth century. They would have clearly been impaired. They would not have fit in any better. They would not have been able to be blacksmiths or hunters or gatherers.
Social unpleasantry would have been just as much a problem in those days as in the present time. Employers would have fired autistic people because they did not like their behavior just the same.
Robison has been quite vague as to how autistic people could be accommodated under ADA (which bars unreasonable accommodations, including putting up with social unpleasantry). The motor problems and meltdowns would have been just as bad if someone were trying to be a whip and buggy manufacturer in the days prior to automobiles.
He goes on to say the rest of the 98% need us because someone with autism invented calculus, apparently implying that Isaac Newton and anyone else who may have invented calculus was autistic. He also states the person who invented pokemon was autistic, but I find that hard to believe also.
Since he's resigned from the science board of autism speaks, Robison's views seem to have shifted radically to someone far more neurodiverse. At one time, he acknowledged that autism was a disability that needed remediating through scientific research. Now he's stated that disability is largely a social construct that can be remedied by societal accommodations. I wonder if he always felt this way and now that being on the board of autism speaks did not work out for him that he no longer has to make politically correct statements to appease a certain subset of persons interested in autism. Of course, I don't know the answer to that.
Once again, I thank John Robison for writing such an interesting article. At the end of the piece he states: A new day is dawning for our community
Yes, it already has, neurodiversity has taken over and has complete credibility and pro-cure people, particularly pro-cure autistics are scoffed and ridiculed.
Monday, April 21, 2014
An answer to question of why autistic boy would want to socialize with girl bullies
The story about two cruel girls who have bullied an autistic teen has been gaining a lot of media traction as of late. These girls compelled him to walk on some ice and when it cracked and he fell into cold water, they had him ride in the trunk of the car. They allegedly compelled him to masturbate and have sex with a family pet. They filmed these events on their cell phones. They've recently been charged criminally and the prosecution is trying to have one of the girls, aged 17, tried as an adult.
The boy has stated that he still considers these girls his friends and wants to continue to socialize with them.
The media have made much of the girls' cruelty and the boy's apparent social naivete in spite of being pretty high functioning and having a high IQ. A number of people seem to be absolutely baffled as to why he'd want to continue an association with these mean girls or they ascribe it to social impairments.
I'm reminded of my own experiences as a 14-year-old boy in 1969 when I was first mainstreamed in the 8th grade (put a year behind my chronologic peers). A number of girls would say, "Jonathan, I love you, will you be my boyfriend?" or pretend an interest in me just to make fun of me. For a brief time, I was socially naive enough to believe some of these girls, though I eventually knew better.
The answer to this question seems likely to be the boy is frustrated from loneliness and celibacy. This is a problem that is pervasive to a number of autistic people, but the media fail to write about and the neurodiversity movement would just like to sweep this problem under the rug. '
A few years ago, autism speaks addressed this issue in a phony baloney PSA, making the bold claim that the insurance mandates that they were lobbying for in various states would make the difference between autistic children having friends and not having friends. I addressed the validity of this in the post I linked to above.
I suspect this boy who attends a mainstream school with non-handicapped adolescents has seen others date and have relationships with the opposite sex and is frustrated by this. He probably has a limited number of friends or maybe no friends at all (of course I'm excluding these girls as friends of his) To me it is very sad that this likely scenario is ignored.
I'm wondering why the media has ignored this issue completely. Is it possible, never having been an autistic male, they are unaware of these frustrations? Or maybe they just don't want to address the real problems persons on the spectrum face because the "feel good" stories sell more newspapers or get more ratings on TV or whatever. I don't know the answer to this, but I suspect this is the case.
The boy has stated that he still considers these girls his friends and wants to continue to socialize with them.
The media have made much of the girls' cruelty and the boy's apparent social naivete in spite of being pretty high functioning and having a high IQ. A number of people seem to be absolutely baffled as to why he'd want to continue an association with these mean girls or they ascribe it to social impairments.
I'm reminded of my own experiences as a 14-year-old boy in 1969 when I was first mainstreamed in the 8th grade (put a year behind my chronologic peers). A number of girls would say, "Jonathan, I love you, will you be my boyfriend?" or pretend an interest in me just to make fun of me. For a brief time, I was socially naive enough to believe some of these girls, though I eventually knew better.
The answer to this question seems likely to be the boy is frustrated from loneliness and celibacy. This is a problem that is pervasive to a number of autistic people, but the media fail to write about and the neurodiversity movement would just like to sweep this problem under the rug. '
A few years ago, autism speaks addressed this issue in a phony baloney PSA, making the bold claim that the insurance mandates that they were lobbying for in various states would make the difference between autistic children having friends and not having friends. I addressed the validity of this in the post I linked to above.
I suspect this boy who attends a mainstream school with non-handicapped adolescents has seen others date and have relationships with the opposite sex and is frustrated by this. He probably has a limited number of friends or maybe no friends at all (of course I'm excluding these girls as friends of his) To me it is very sad that this likely scenario is ignored.
I'm wondering why the media has ignored this issue completely. Is it possible, never having been an autistic male, they are unaware of these frustrations? Or maybe they just don't want to address the real problems persons on the spectrum face because the "feel good" stories sell more newspapers or get more ratings on TV or whatever. I don't know the answer to this, but I suspect this is the case.
Thursday, April 10, 2014
HHS secretary Kathleen Sebelius resigns
I've just heard the news that Obama's longest serving cabinet member, secretary of Health and Human Services, Kathleen Sebelius has just tendered her resignation.
She was apparently dogged by controversies over the poor rollout of Obamacare and the lackluster website which people used to enroll in it as well as the poor implementation of this new law by the Obama administration.
What Ms. Sebelius is less widely known for is her authority to appoint public members to the Interagency Autism Coordinating Committee, the branch of the government that *ahem* suggests autism policy to the U.S. Government.
Ms. Sebelius has appointed several members of the neurodiversity movement to public membership posts in the IACC. It would seem she really does not give a shit about kids being crippled or sick. One of the persons she appointed is a high school dropout who didn't finish the tenth grade. Other members she's appointed have said that disability is a "social construct" and that autistic people would do just fine with the right accommodations. Another of her appointees has likened parents who wish to cure their autistic children to members of the Ku Klux Klan.
I can only hope that Sylvia Burwell, who has been tapped to replace her will take a more sane and rational approach to autism. Perhaps she will no longer appoint members of the neurodiversity movement to government posts.
I realize I shouldn't get my hopes up too high. My understanding is that Sebelius rubber stamped all of the IACC appointees based on recommendations from NIMH head Thomas Insel. Perhaps I should regard him as the real scoundrel and not her. I guess I can only hope congress can be persuaded not to reauthorize the IACC when the CAA sunsets in September of 2014. I know it's not going to happen but I can dream, can't I?
She was apparently dogged by controversies over the poor rollout of Obamacare and the lackluster website which people used to enroll in it as well as the poor implementation of this new law by the Obama administration.
What Ms. Sebelius is less widely known for is her authority to appoint public members to the Interagency Autism Coordinating Committee, the branch of the government that *ahem* suggests autism policy to the U.S. Government.
Ms. Sebelius has appointed several members of the neurodiversity movement to public membership posts in the IACC. It would seem she really does not give a shit about kids being crippled or sick. One of the persons she appointed is a high school dropout who didn't finish the tenth grade. Other members she's appointed have said that disability is a "social construct" and that autistic people would do just fine with the right accommodations. Another of her appointees has likened parents who wish to cure their autistic children to members of the Ku Klux Klan.
I can only hope that Sylvia Burwell, who has been tapped to replace her will take a more sane and rational approach to autism. Perhaps she will no longer appoint members of the neurodiversity movement to government posts.
I realize I shouldn't get my hopes up too high. My understanding is that Sebelius rubber stamped all of the IACC appointees based on recommendations from NIMH head Thomas Insel. Perhaps I should regard him as the real scoundrel and not her. I guess I can only hope congress can be persuaded not to reauthorize the IACC when the CAA sunsets in September of 2014. I know it's not going to happen but I can dream, can't I?
Thursday, March 13, 2014
Interesting article on Adam Lanza by Andrew Solomon
There's been some buzz in the media recently about an interview that Peter Lanza--the father of Newgate shooter Adam Lanza--had done for New Yorker Magazine. I was interested to discover that this article is now online The author was Andrew Solomon who wrote the book "Far From the Tree" that dealt with multiple disabilities, including autism. About five years ago, Solomon also wrote an article about the neurodiversity movement for New York Magazine. Your humble blogger was briefly mentioned in this article as well as in Solomon's book.
The article leaves no doubt whatsoever that Adam Lanza had a professionally made diagnosis of Asperger's syndrome. The neurodiversity movement often makes diagnoses of virtuous figures such as Bill Gates, Albert Einstein, Vernon Smith, etc. to help promote the idea that autism could be a good thing. They were apparently in no hurry to do this with Lanza. In fact, after the shootings, a flurry of articles appeared attempting to distance autism spectrum disorders from the shooting and an insistence that there is no relationship between autism and violent crime. Ironically, one of these individuals was Wrong Planet founder Alex Plank who, when one WP member threatened people, neglected to report this fact to the authorities, resulting in the deaths of two innocent victims. Subsequently, another individual last year threatened to go out and murder some people. This member is still a member on WP in good standing. WP only deleted the post apparently after Gadfly reported this to the FBI and WP was contacted.
I won't comment on this article further, but I found it interesting reading and I believe some others may also. My one final thought to Alex Plank and other members of the neurodiversity movement is you can't have your cake and eat it too.
The article leaves no doubt whatsoever that Adam Lanza had a professionally made diagnosis of Asperger's syndrome. The neurodiversity movement often makes diagnoses of virtuous figures such as Bill Gates, Albert Einstein, Vernon Smith, etc. to help promote the idea that autism could be a good thing. They were apparently in no hurry to do this with Lanza. In fact, after the shootings, a flurry of articles appeared attempting to distance autism spectrum disorders from the shooting and an insistence that there is no relationship between autism and violent crime. Ironically, one of these individuals was Wrong Planet founder Alex Plank who, when one WP member threatened people, neglected to report this fact to the authorities, resulting in the deaths of two innocent victims. Subsequently, another individual last year threatened to go out and murder some people. This member is still a member on WP in good standing. WP only deleted the post apparently after Gadfly reported this to the FBI and WP was contacted.
I won't comment on this article further, but I found it interesting reading and I believe some others may also. My one final thought to Alex Plank and other members of the neurodiversity movement is you can't have your cake and eat it too.
Friday, March 7, 2014
Finished first draft of my third novel "Going Through The Doors". Now what?
I've recently finished a first draft of my latest (my third) novel "Going Through The Doors" It's a novel about LSD use, teenage angst, and abreaction (look it up). Other than that, I don't want to go into too much detail about it yet. I've got about 133,000 words which comes out to about 439 double spaced pages in word perfect 12 (I've used word perfect 5.1 particularly in the DOS, pre-windows days and I'm not overly fond of Word). Now, I've sort of come to the hard part. I have no hard copy of the manuscript and I'd like to start trying to make revisions with that. It's a bit much for me to print out on my own printer and I've sent an email to Fedex (formerly Kinko's) to get a quote for how much it would cost to type it out. After this, hopefully I can get started with a rewrite. I'm sure it's going to need a major one, which I'm probably not capable of turning into a publishable novel.
I used them with "The Mu Rhythm Bluff", my second novel, and I had to end up paying more for than their quote which sort of pissed me off. I don't know where else I can go and get this done. I'm waiting for them to respond to my email.
In spite of the lack of the hard copy, I've started to rewrite the 'script a bit. I might be able to rewrite it without a physical copy, but not sure. After I've rewritten it to the best of my ability, I guess I could rejoin the internet writer's workshop which I left, not sure I'd ever have another manuscript which they could critique. I submitted "The Mu Rhythm Bluff" in its entirety to this list and got some helpful feedback. Of course, the number of crits I got was limited as some people felt that long descriptions of poker hands were a bit tedious. I tried to reciprocate and crit as many people as possible also.
After this is done, I will have to ask the question "now what?" Is there any point in submitting it to an agent for publication? When I was shopping my first novel, "The school of Hard Knocks" around, I got a few agents who were interested in reading it, but they took a pass on it as well as the ones who did not want to read it. Susan Ramer who was Catherine Stocket's (The Help) agent was one of the people interested in reading it and suggested I might want to have a professional editor look at it and polish it up before sending it to more agents. I went to some editors, most of them were not terribly helpful and they were really expensive and a bit beyond my means. I finally gave up on that first novel, giving it a good flogging and relegating it to cobweb filled shelves, a space becoming literary cluster fucks.
I'd dreamed of using my autism as a gimmick of sorts to get this autism-related novel published. I had high hopes when I met journalist Tamar Brott who in the past has done stories for the NPR shows "This American Life" and "Studio 360". I hoped getting on "This American Life" would result in publication by a major house. After This American Life was enthused about doing a show created by Tamar about me and my novel, they decided they did not like the way Tamar had written it and killed (or at least put into abeyance) the show. I ended up on Studio 360 which was a nice consolation prize, but it did not result in publication of the unpublishable work. The gimmick failed me.
After I'd been through rewriting and limited editing of "The Mu Rhythm Bluff", I took the plunge and queried with nine agents. I noticed things had changed in the several year interval between my first and second novel. Agents no longer even answered prospective authors for the most part if they were not interested in the work. The publishing industry had totally changed with digital readership and the big chain Borders going out of business and Barnes and Noble having trouble. Amazon had started to rule the world. The only up side was that thanks to Amazon and their Create Space and KDP select programs, self-publication was a far more viable option. I took that route, hoping I could use the gimmick to promote this book. Tamar had moved to another city and was busy with other things so she could not get me on NPR. I wrote to Studio 360, asking if they remembered me and were interested in doing another show with me. They just wrote me a "don't call us we'll call you" email. No media people or reporters were interested in my story, an autistic novelist having written an autism-related novel. Advertising was not viable or too expensive except for the money I spent on Good Reads. In short no one was interested in the gimmick which would result in "The Mu Rhythm Bluff" being published by a major house getting on the New York Times best seller list and being made into a major motion picture or anything like that. In the year that it's been out I've only managed to sell 49 ebook copies and three physical book copies-an average of about one book per week.
"Going through the Doors" is a different story. The teenaged protagonist does not have autism and there is no mention of autism in the book. There is no real way I can use the gimmick for this one. It does not look like the third time will be the charm. So, as I await being able to obtain a hard copy of this draft, I must ask a few questions. How will I know it is ready for submission or self publication? Is there any reason at all to even bother querying with an agent? Is it worth my while to invest the time and capital of self publishing it Amazon, even if it is ever ready for such? In short I must ask the question, Now what?
I used them with "The Mu Rhythm Bluff", my second novel, and I had to end up paying more for than their quote which sort of pissed me off. I don't know where else I can go and get this done. I'm waiting for them to respond to my email.
In spite of the lack of the hard copy, I've started to rewrite the 'script a bit. I might be able to rewrite it without a physical copy, but not sure. After I've rewritten it to the best of my ability, I guess I could rejoin the internet writer's workshop which I left, not sure I'd ever have another manuscript which they could critique. I submitted "The Mu Rhythm Bluff" in its entirety to this list and got some helpful feedback. Of course, the number of crits I got was limited as some people felt that long descriptions of poker hands were a bit tedious. I tried to reciprocate and crit as many people as possible also.
After this is done, I will have to ask the question "now what?" Is there any point in submitting it to an agent for publication? When I was shopping my first novel, "The school of Hard Knocks" around, I got a few agents who were interested in reading it, but they took a pass on it as well as the ones who did not want to read it. Susan Ramer who was Catherine Stocket's (The Help) agent was one of the people interested in reading it and suggested I might want to have a professional editor look at it and polish it up before sending it to more agents. I went to some editors, most of them were not terribly helpful and they were really expensive and a bit beyond my means. I finally gave up on that first novel, giving it a good flogging and relegating it to cobweb filled shelves, a space becoming literary cluster fucks.
I'd dreamed of using my autism as a gimmick of sorts to get this autism-related novel published. I had high hopes when I met journalist Tamar Brott who in the past has done stories for the NPR shows "This American Life" and "Studio 360". I hoped getting on "This American Life" would result in publication by a major house. After This American Life was enthused about doing a show created by Tamar about me and my novel, they decided they did not like the way Tamar had written it and killed (or at least put into abeyance) the show. I ended up on Studio 360 which was a nice consolation prize, but it did not result in publication of the unpublishable work. The gimmick failed me.
After I'd been through rewriting and limited editing of "The Mu Rhythm Bluff", I took the plunge and queried with nine agents. I noticed things had changed in the several year interval between my first and second novel. Agents no longer even answered prospective authors for the most part if they were not interested in the work. The publishing industry had totally changed with digital readership and the big chain Borders going out of business and Barnes and Noble having trouble. Amazon had started to rule the world. The only up side was that thanks to Amazon and their Create Space and KDP select programs, self-publication was a far more viable option. I took that route, hoping I could use the gimmick to promote this book. Tamar had moved to another city and was busy with other things so she could not get me on NPR. I wrote to Studio 360, asking if they remembered me and were interested in doing another show with me. They just wrote me a "don't call us we'll call you" email. No media people or reporters were interested in my story, an autistic novelist having written an autism-related novel. Advertising was not viable or too expensive except for the money I spent on Good Reads. In short no one was interested in the gimmick which would result in "The Mu Rhythm Bluff" being published by a major house getting on the New York Times best seller list and being made into a major motion picture or anything like that. In the year that it's been out I've only managed to sell 49 ebook copies and three physical book copies-an average of about one book per week.
"Going through the Doors" is a different story. The teenaged protagonist does not have autism and there is no mention of autism in the book. There is no real way I can use the gimmick for this one. It does not look like the third time will be the charm. So, as I await being able to obtain a hard copy of this draft, I must ask a few questions. How will I know it is ready for submission or self publication? Is there any reason at all to even bother querying with an agent? Is it worth my while to invest the time and capital of self publishing it Amazon, even if it is ever ready for such? In short I must ask the question, Now what?
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