Several months ago it was announced that Autism Speaks had partnered with Google to sequence of the genomes of 10,000 persons on the autism spectrum and their family members. It was hoped that the project would find clues to the etiology of at least some forms of autism as it is quite possible if not probable that they partially originate from some form of genetic mutations.
When I first heard about the partnership between AS and Google I wondered if, to be consistent, whether or not the members of neurodiversity would boycott Google. If they urge boycotts of other organizations involved with autism speaks perhaps they should not use a google search engine, not use blogger blogs and never again view or post a video on youtube. As far as I know, none of them have done this yet. Nor, to the best of my knowledge, have they written a letter to Google urging them to severe ties with the organization they hate so much as they've done with Sesame Street and other groups who have had an association with autism speaks. Or even if they would claim that this project would result in eugenics. Now, apparently they have taken some action.
Autism Speaks has used a promotional gimmick to advertise this partnership of using the term mssng with certain letters deliberately omitted. They have also used #mssng as a hash tag on twitter. They apparently meant that certain information was missing in autism and were not directing it at autistic people. Only hoping that missing answers could be found to help autistic people.
Predictably, members of the neurodiversity movement have taken umbrage. They have responded angrily, that they are not mssng, there is nothing wrong with them, autism speaks are evil ogres who are insulting them and are even trying to destroy them. They have added their own hash tag on twitter, #notmssng.
Others have provided more tempered responses stating that what is mssng are supports and services. At the forefront of this is one of ND's most prominent proponents John Elder Robison. He's written a response to the mssng campaign. Interestingly enough he states that he favors genetic research of this sort, but says it would not be a priority of his. Then he goes on to state we are spending money in the wrong places and should not be looking at the "autism riddle". He states that we need therapies and other services to fill in the gap and that these are obtainable. He not only stated that there should be funding for these endeavors, but that it should be administered by autistic people. If he has such great ideas with all of his money, power and influence, and he does not agree with Autism Speaks' spending priorities why he doesn't start his own 501(c) organization and attempt to do this and fund certain projects or suggest what and how they can be funded? How can someone disabled by autism be accommodated so they can have a job, a lifetime partner and other goals. How can a nonverbal autistic be treated and accommodated so that they can speak? What research can be done that will help autistic people in the here and now, since Robison complains that genetic research will not help anyone in the foreseeable future.
ASAN is now a 501(c) organization run exclusively by autistic people, exactly the type of enterprise that Robison is talking about. They have made similar claims that acceptance and accommodations will solve everything and that if AS spent their money more wisely we could achieve the goals that Robison has discussed. In Gadfly's opinion, ASAN has failed miserably in this regard. I have read their stuff and yet, I can't recall them having written what accommodations and therapies can help autistic people. They only want to tear down autism speaks and persons, like myself, who want to find a cure. They demonstrate against autism speaks and talk about how terrible it is, yet don't seem to want to provide any solutions of their own the problems autism causes, regardless of whether it's a medical disability or a social disability. Out of their $300,000 dollar budget $65,000 alone goes just to pay Ari Ne'eman's salary. Much of the rest of the money goes to other staff members pay and rents on offices.
I realize that ASAN's response to this is that since people wrongly perceive autism to be a disease or a defect rather than neurodiversity's description of an alternative form of brain wiring they will donate money to autism speaks and if ASAN had the millions that AS does and not merely a few hundred grand in assets perhaps they could provide research into supports and accommodations and therapies that would help autistics now and not decades from now. I don't believe that poor capitalization is an excuse. I'm still waiting for suggestions from Robison, ASAN, or any other members of the ND movement for that matter as how this can be done. They are saliently lacking in those suggestions.
Will the ND movement at some point in time provide the #mssng link? I won't hold my bated breath.
Thursday, December 11, 2014
Tuesday, December 2, 2014
What does current supreme court free speech case bode for Wrongplanet.net and its members
There's a story in the news that's been gaining some traction as of late that has piqued my interest. It is about an individual named Anthony Elonis, a former amusement park worker, who wrote lyrics in the form of rap poetry threatening to kill his estranged wife as well as an FBI agent who questioned him on Facebook. There are federal laws against making such threats and Elonis was prosecuted and convicted. He is now going before the Supreme Court stating that these laws against posting idle threats that he did not intend to carry out violate his first amendment right to free speech and are therefore unconstitutional. Elonis claimed that these weren't actually threats but were in fact rants he was making in order to blow off steam and that a reasonable person would not believe these were actual threats. His attorney, John Elwood gave these as arguments. From what I've read, SCOTUS won't render a decision on this matter probably until next summer, but based on their responses to Elwood, they don't appear to be ruling in Elonis' favor. Hopefully they will render a verdict that threats such as these don't constitute free speech protected under the first amendment.
Does this sound familiar to the few regular readers of Autism's Gadfly? It should because one poster on wrongplanet.net did something very similar. Like Elonis, this person gave a similar rationale for his actions, stating it was only a rant to blow off steam and not an actual threat. Apparently this person was not an American, but lived in Switzerland where the laws may be different. He was apparently questioned by authorities and may have been subject to prosecution from what I gathered from reading what he said. If he were in the U.S.A. he probably could have been prosecuted under the same laws that Elonis was.
In another instance, an individual named William Freund posted on Wrongplanet that he was going to hurt some people. These were not idle threats, but Freund actually carried them out and murdered two people. Alex Plank and whatever other persons were responsible for running things at Wrong Planet neglected to report this individual to the authorities. If they had, lives may have been saved. I was the one who reported the second individual to the FBI and that is probably the only reason the Swiss authorities were investigating him. This individual has not been banned from Wrong planet but is still a member in good standing.
I doubt very much that Facebook or any other website that Elonis posted such things would allow him to do so. Yet Wrongplanet is fine in being complicit with illegal activities and not reporting actions such as these to law enforcement authorities and allowing them to continue to do so and allowing people who violate federal laws to be members in good standing.
I believe that not only is it possible there will be a third such incident (assuming there have not been others that I don't know about) but I suspect based on the type of people who post on Wrongplanet it is highly probable that there will be. I'm not sure what the law is, but I wonder if Plank or anyone else involved in the day-to-day administration of Wrongplanet can be prosecuted for complicity in these things. I know that Plank and Wrongplanet were sued by the family of the persons Freund murdered, but I don't know what the outcome of the suit was, whether Plank settled with the family or whether or not a judgment was rendered and I'm not sure what Plank's and WP's liability is in such a circumstance.
However, I believe something should be done about this. I'm not sure I have the time and inclination to monitor WP for such posts, but I believe this website and it's administrators should be watched. I hope the Supreme Court won't allow this to be constitutionally protected free speech. I am in favor of the first amendment and free speech, but I believe a line should be drawn somewhere and threats such as these should not be called "rants" or be constitutionally protected.
I can only hope that law enforcement authorities will be watching Plank and his buddies on WP. If there is no law where these people can be prosecuted for this stuff, I hope that congress will enact one and if it happens again Plank and other staff members of Wrongplanet will be prosecuted to the fullest extent of that law.
However, this does not seem to be the case. Plank was a keynote speaker at ASA, Autism Speaks funded his and John Robison junior's inane videos, he was also a consultant on the defunct TV show The Bridge. Plank continues to bask in glory despite his misdemeanors. I'm not sure I understand this, but I hope if the SCOTUS does not render a favorable verdict in this case, that it won't bode well for Wrongplanet and individuals who write posts such as these and something will be done.
Does this sound familiar to the few regular readers of Autism's Gadfly? It should because one poster on wrongplanet.net did something very similar. Like Elonis, this person gave a similar rationale for his actions, stating it was only a rant to blow off steam and not an actual threat. Apparently this person was not an American, but lived in Switzerland where the laws may be different. He was apparently questioned by authorities and may have been subject to prosecution from what I gathered from reading what he said. If he were in the U.S.A. he probably could have been prosecuted under the same laws that Elonis was.
In another instance, an individual named William Freund posted on Wrongplanet that he was going to hurt some people. These were not idle threats, but Freund actually carried them out and murdered two people. Alex Plank and whatever other persons were responsible for running things at Wrong Planet neglected to report this individual to the authorities. If they had, lives may have been saved. I was the one who reported the second individual to the FBI and that is probably the only reason the Swiss authorities were investigating him. This individual has not been banned from Wrong planet but is still a member in good standing.
I doubt very much that Facebook or any other website that Elonis posted such things would allow him to do so. Yet Wrongplanet is fine in being complicit with illegal activities and not reporting actions such as these to law enforcement authorities and allowing them to continue to do so and allowing people who violate federal laws to be members in good standing.
I believe that not only is it possible there will be a third such incident (assuming there have not been others that I don't know about) but I suspect based on the type of people who post on Wrongplanet it is highly probable that there will be. I'm not sure what the law is, but I wonder if Plank or anyone else involved in the day-to-day administration of Wrongplanet can be prosecuted for complicity in these things. I know that Plank and Wrongplanet were sued by the family of the persons Freund murdered, but I don't know what the outcome of the suit was, whether Plank settled with the family or whether or not a judgment was rendered and I'm not sure what Plank's and WP's liability is in such a circumstance.
However, I believe something should be done about this. I'm not sure I have the time and inclination to monitor WP for such posts, but I believe this website and it's administrators should be watched. I hope the Supreme Court won't allow this to be constitutionally protected free speech. I am in favor of the first amendment and free speech, but I believe a line should be drawn somewhere and threats such as these should not be called "rants" or be constitutionally protected.
I can only hope that law enforcement authorities will be watching Plank and his buddies on WP. If there is no law where these people can be prosecuted for this stuff, I hope that congress will enact one and if it happens again Plank and other staff members of Wrongplanet will be prosecuted to the fullest extent of that law.
However, this does not seem to be the case. Plank was a keynote speaker at ASA, Autism Speaks funded his and John Robison junior's inane videos, he was also a consultant on the defunct TV show The Bridge. Plank continues to bask in glory despite his misdemeanors. I'm not sure I understand this, but I hope if the SCOTUS does not render a favorable verdict in this case, that it won't bode well for Wrongplanet and individuals who write posts such as these and something will be done.
Sunday, November 9, 2014
certain autism advocates cavalier attitude about Seinfeld's self-diagnosis
I suppose the story about Seinfeld stating that he believes he's someplace on the autism spectrum isn't going to die down anytime soon (at least a few more days). So, perhaps this post is overkill, but I'd like to add some of my thoughts on the comments of various high profile persons and organizations involved with autism who don't seem to mind trivializing the disability that makes life so hard for so many of us.
Ari Ne'eman stated that Seinfeld's self-diagnosis shows that the autism community is larger and more diverse than most people realize and sends a positive message. He believes it helps someone at a job who has not disclosed their autism diagnosis to their employer and co-workers not have the stigma of this condition. He also implies that stigma rather than disability or impairment is what limits opportunities for those on the spectrum. He believes that it will build greater tolerance of autism. I don't think most people will actually believe the comedian has any sort of ASD and autism is still autism, Ari. It's still going to disable people from working, finding relationships, etc. Whatever stigma exists is still going to be there. People still won't tolerate behavioral problems from autism, including the neurodiversity movement's opinions of people like Christian Weston Chandler. Loud voices, poor social skills, meltdowns in public places will still exist and Seinfeld's comments won't change that.
Author and autism advocate John Elder Robison has also gotten into the act in the linked essay he wrote for his Psychology Today blog. He states that he believes it's a good thing that important, well-known people identify with autism and he elaborates.
Mr. Seinfeld’s speculation that he “may be on the spectrum,” may be the first step in an actual diagnosis or evaluation, and it may be a milestone of his journey of self-discovery. Many people are critical of self -diagnosis, but the fact is, most adult diagnoses start by people asking themselves, “might I be autistic?” Seldom are adults handed this diagnosis out of the blue. So before we attack self-diagnosis let’s remember that’s how “real diagnosis” begins for many adults.
Somehow I doubt that Seinfeld will see a psychologist or psychiatrist for a formal diagnosis as it does not affect his abilities in any way and he would have sought professional help for his lack of social understanding and taking things literally if he'd thought it were warranted. The same is true of neurodiversity poster boy Vernon Smith who self-diagnosed himself with a Simon Baron Cohen AQ quiz. Yes, I'm critical of self-diagnosis, because until someone is diagnosed by a trained clinician, that's all it is, a self-diagnosis, even if people start out with that and it remains so until validated by a professional. It trivializes people who really have the condition and suffer. I wonder about the people who never received diagnosis until adulthood. Were they nonverbal as children, didn't their parents know something was wrong with them? Did they attempt to get a diagnosis for something even if they're middle aged in a time that diagnosis was not well known? These are points to ponder.
I won't comment on Robison's other talking points further, as they are the same old, same old and I've discussed them previously.
Such insensitive commentary is par for the course from both Ne'eman and Robison. We've been hearing this stuff from them for years, so it comes as no surprise. But what about other people whom Gadfly believes should know better?
Liz Feld, president of Autism Speaks had the following to say:
“there are many people on the autism spectrum who can relate to Jerry’s heartfelt comments about his own experiences.”
To me, this is an insensitive statement since Jerry's rational for believing that he's on the spectrum certainly doesn't reflect with diaper wearing head bangers or even the much higher functioning people who actually have legitimate diagnoses who can't hold down a job or get a date. But I suppose I shouldn't be surprised at this statement from an organization that would have John Elder Robison on their science advisory board, fund Laurent Mottron and support Alex Plank's Autism Talk TV. However, autism speaks does promote the idea that they're interested in curing autism on their walks and fundraisers and on their web page (Though I'm wondering if they really feel that way) so don't know why they'd trivialize the condition that they want to raise money to understand and ameliorate.
Autism Society of America President Scott Badesch also commented
There is nothing beautiful about autism. It is a horrible disorder that afflicts people in a pernicious manner. It is disappointing that the leader of a large Autism group would say things like that, but I suppose I should not be surprised that an organization that would support Ari Ne'eman being on the National Disabilities Council and have Alex Plank has a keynote speaker at one of their conferences.
As I said before, Ne'eman and Robison's insensitivity are par for the course for them so not quite as shocking. But it is hurtful (at least to me) that these other two organizations who I'd think would be interested in helping people afflicted with autism would make such cavalier statements.
Ari Ne'eman stated that Seinfeld's self-diagnosis shows that the autism community is larger and more diverse than most people realize and sends a positive message. He believes it helps someone at a job who has not disclosed their autism diagnosis to their employer and co-workers not have the stigma of this condition. He also implies that stigma rather than disability or impairment is what limits opportunities for those on the spectrum. He believes that it will build greater tolerance of autism. I don't think most people will actually believe the comedian has any sort of ASD and autism is still autism, Ari. It's still going to disable people from working, finding relationships, etc. Whatever stigma exists is still going to be there. People still won't tolerate behavioral problems from autism, including the neurodiversity movement's opinions of people like Christian Weston Chandler. Loud voices, poor social skills, meltdowns in public places will still exist and Seinfeld's comments won't change that.
Author and autism advocate John Elder Robison has also gotten into the act in the linked essay he wrote for his Psychology Today blog. He states that he believes it's a good thing that important, well-known people identify with autism and he elaborates.
Mr. Seinfeld’s speculation that he “may be on the spectrum,” may be the first step in an actual diagnosis or evaluation, and it may be a milestone of his journey of self-discovery. Many people are critical of self -diagnosis, but the fact is, most adult diagnoses start by people asking themselves, “might I be autistic?” Seldom are adults handed this diagnosis out of the blue. So before we attack self-diagnosis let’s remember that’s how “real diagnosis” begins for many adults.
Somehow I doubt that Seinfeld will see a psychologist or psychiatrist for a formal diagnosis as it does not affect his abilities in any way and he would have sought professional help for his lack of social understanding and taking things literally if he'd thought it were warranted. The same is true of neurodiversity poster boy Vernon Smith who self-diagnosed himself with a Simon Baron Cohen AQ quiz. Yes, I'm critical of self-diagnosis, because until someone is diagnosed by a trained clinician, that's all it is, a self-diagnosis, even if people start out with that and it remains so until validated by a professional. It trivializes people who really have the condition and suffer. I wonder about the people who never received diagnosis until adulthood. Were they nonverbal as children, didn't their parents know something was wrong with them? Did they attempt to get a diagnosis for something even if they're middle aged in a time that diagnosis was not well known? These are points to ponder.
I won't comment on Robison's other talking points further, as they are the same old, same old and I've discussed them previously.
Such insensitive commentary is par for the course from both Ne'eman and Robison. We've been hearing this stuff from them for years, so it comes as no surprise. But what about other people whom Gadfly believes should know better?
Liz Feld, president of Autism Speaks had the following to say:
“there are many people on the autism spectrum who can relate to Jerry’s heartfelt comments about his own experiences.”
To me, this is an insensitive statement since Jerry's rational for believing that he's on the spectrum certainly doesn't reflect with diaper wearing head bangers or even the much higher functioning people who actually have legitimate diagnoses who can't hold down a job or get a date. But I suppose I shouldn't be surprised at this statement from an organization that would have John Elder Robison on their science advisory board, fund Laurent Mottron and support Alex Plank's Autism Talk TV. However, autism speaks does promote the idea that they're interested in curing autism on their walks and fundraisers and on their web page (Though I'm wondering if they really feel that way) so don't know why they'd trivialize the condition that they want to raise money to understand and ameliorate.
Autism Society of America President Scott Badesch also commented
Recently, Jerry Seinfeld is suggesting he might be on the autism spectrum. For so many of us, Jerry has been an amazing person who has made us laugh and taught us many lessons about life.
He is a wonderful person and if he is in fact an individual on the spectrum, we are delighted that he will be an example for everyone to see the beauty, intelligence, skill, and everything else that defines so many who live with Autism Spectrum Disorder.
There is nothing beautiful about autism. It is a horrible disorder that afflicts people in a pernicious manner. It is disappointing that the leader of a large Autism group would say things like that, but I suppose I should not be surprised that an organization that would support Ari Ne'eman being on the National Disabilities Council and have Alex Plank has a keynote speaker at one of their conferences.
As I said before, Ne'eman and Robison's insensitivity are par for the course for them so not quite as shocking. But it is hurtful (at least to me) that these other two organizations who I'd think would be interested in helping people afflicted with autism would make such cavalier statements.
Friday, November 7, 2014
Seinfeld on the autism spectrum?
Renowned comedian Jerry Seinfeld has apparently recently decided that's he's somewhere on the autism spectrum. The reason is that he does not pay attention to the right things, takes things literally and has trouble with "social engagement". I'm not sure what that term means, but I presume it's his ability to relate to people and make friends and find significant others, which is frequently if not almost always impaired in autistic people. (I'll discuss this further later in the post). Mr. Seinfeld has apparently diagnosed himself rather than bothering to consult a clinician. One of the reasons for this may be that he seems to believe his autism is not a dysfunction but an alternative mindset. He joins John Elder Robison in insisting that he's on the autism spectrum in spite of not having a disability of any kind. This makes his belief similar to what members of the neurodiversity movement have been saying about autism for years. Or that it is only a dysfunction because it is not adequately accommodated.
Will ASAN, the Thinking Person's Guide to Autism and other pro-neurodiversity organizations adopt Seinfeld as one of their own, ask him to endorse their cause and help them raise money? The answer is not entirely clear since about five years ago or so, Mr. Seinfeld along with Bruce Springstein hosted a benefit for autism speaks and helped them raise nearly two million dollars. This contrasts with the nearly fifteen thousand dollars that ASAN lost in one of their fundraisers not long ago. Because of this, Seinfeld and Neurodiversity had previously been at loggerheads as I've written in the linked post. In the post I linked to a video that ASAN made in which Seinfeld is harassed by various ASAN members as he enters the concert hall in New York City to give his Autism Speaks benefit performance. Unfortunately, this video has been made private on youtube and can no longer be viewed by the general public. Of course, AS put Robison on their science advisory board, funded Alex Plank and Robison junior's Autism Talk TV and gave half a million dollars to neurodiversity scientist Laurent Mottron. So, I suppose I should not be surprised if Seinfeld decided to do a benefit for ASAN. It is certainly a fund raising idea for Ari Ne'eman to think about as he may not be able to afford to give himself another 62% annual salary increase if ASAN can't think of a way to raise additional revenue. Perhaps Mr. Ne'eman will consider getting Jerry to switch over from autism speaks and give a benefit for ASAN.
Neurodiversity has never cared about people diagnosing themselves. Economist Vernon Smith diagnosed himself using a self-administered quiz, yet that has not stopped them from promoting him as an example as to why autism should not be cured. As well as using him to claim autism has some sort of benefits to society.
Since Seinfeld and I are almost the same age, I wonder how he'd have felt if he had to attend special education schools (and sometimes being abused there) in the sixties. If he'd had to spend more than ten years in psychoanalysis because Bettelheim's theories were in vogue at the time. How he would have felt if he had a phobia of birds, had been a chronic bedwetter until age 13 and could not get things done during the day because he was compelled to engage in twiddling (or some other self stimulatory behavior) I wonder if he had the same rejection from peers as I did as a child or how he'd feel if he had.
Seinfeld claims that he has trouble with social engagement. I wonder why this did not impair his ability to meet and date women and eventually marry one. One way that we are different is in popularity with women. I'm nearly Seinfeld's age, and though I have some casual dating with women, i've never had a full-fledged girlfriend. Seinfeld in his late thirties dated Soshana Lowenstein who at the time was only seventeen when she first started going out with the celebrated comedian. Next came girlfriend Carol Leifer. Seinfield finally settled down and married Jessica Sklar at the ripe age of forty-five.
As for a contrast in our abilities to support ourselves, I no longer work and am supported by family in contrast to Seinfeld who has made millions. I wonder how Seinfeld would feel if he had to spend more than four years unsuccessfully trying to get disability and know that he'd end up being homeless if he didn't have a supportive family.
Interestingly, Seinfeld is admired by an individual on the autistic spectrum who has also been quite unsuccessful with women and has gone out of his way to advertise for a girlfriend, sometimes in a crude manner. Christian Weston Chandler has made a you tube video in tribute to the comedian he admires. Chris Chan has often been a foil for various members of the ND movement. I've written about Chris previously. I never really understood why the neurodiversity movement always preached for acceptance of autistic individuals yet a good number of them always wanted to criticize this individual or even ridicule and make fun of him. The fact that he's such a huge fan of Seinfeld's might discourage ASAN from approaching the comedian to do a fundraiser for them, but I don't know.
Compared to most on the spectrum though, I've had it quite good and have worked in the past and am pretty high-functioning though it has impaired my life to a significant degree. There are others with intellectual disabilities, who can't talk, engage in self-injurious behavior and smear feces on walls. I don't think it is helpful for celebrities such as this man to trivialize this condition which affects so many people.
Will ASAN, the Thinking Person's Guide to Autism and other pro-neurodiversity organizations adopt Seinfeld as one of their own, ask him to endorse their cause and help them raise money? The answer is not entirely clear since about five years ago or so, Mr. Seinfeld along with Bruce Springstein hosted a benefit for autism speaks and helped them raise nearly two million dollars. This contrasts with the nearly fifteen thousand dollars that ASAN lost in one of their fundraisers not long ago. Because of this, Seinfeld and Neurodiversity had previously been at loggerheads as I've written in the linked post. In the post I linked to a video that ASAN made in which Seinfeld is harassed by various ASAN members as he enters the concert hall in New York City to give his Autism Speaks benefit performance. Unfortunately, this video has been made private on youtube and can no longer be viewed by the general public. Of course, AS put Robison on their science advisory board, funded Alex Plank and Robison junior's Autism Talk TV and gave half a million dollars to neurodiversity scientist Laurent Mottron. So, I suppose I should not be surprised if Seinfeld decided to do a benefit for ASAN. It is certainly a fund raising idea for Ari Ne'eman to think about as he may not be able to afford to give himself another 62% annual salary increase if ASAN can't think of a way to raise additional revenue. Perhaps Mr. Ne'eman will consider getting Jerry to switch over from autism speaks and give a benefit for ASAN.
Neurodiversity has never cared about people diagnosing themselves. Economist Vernon Smith diagnosed himself using a self-administered quiz, yet that has not stopped them from promoting him as an example as to why autism should not be cured. As well as using him to claim autism has some sort of benefits to society.
Since Seinfeld and I are almost the same age, I wonder how he'd have felt if he had to attend special education schools (and sometimes being abused there) in the sixties. If he'd had to spend more than ten years in psychoanalysis because Bettelheim's theories were in vogue at the time. How he would have felt if he had a phobia of birds, had been a chronic bedwetter until age 13 and could not get things done during the day because he was compelled to engage in twiddling (or some other self stimulatory behavior) I wonder if he had the same rejection from peers as I did as a child or how he'd feel if he had.
Seinfeld claims that he has trouble with social engagement. I wonder why this did not impair his ability to meet and date women and eventually marry one. One way that we are different is in popularity with women. I'm nearly Seinfeld's age, and though I have some casual dating with women, i've never had a full-fledged girlfriend. Seinfeld in his late thirties dated Soshana Lowenstein who at the time was only seventeen when she first started going out with the celebrated comedian. Next came girlfriend Carol Leifer. Seinfield finally settled down and married Jessica Sklar at the ripe age of forty-five.
As for a contrast in our abilities to support ourselves, I no longer work and am supported by family in contrast to Seinfeld who has made millions. I wonder how Seinfeld would feel if he had to spend more than four years unsuccessfully trying to get disability and know that he'd end up being homeless if he didn't have a supportive family.
Interestingly, Seinfeld is admired by an individual on the autistic spectrum who has also been quite unsuccessful with women and has gone out of his way to advertise for a girlfriend, sometimes in a crude manner. Christian Weston Chandler has made a you tube video in tribute to the comedian he admires. Chris Chan has often been a foil for various members of the ND movement. I've written about Chris previously. I never really understood why the neurodiversity movement always preached for acceptance of autistic individuals yet a good number of them always wanted to criticize this individual or even ridicule and make fun of him. The fact that he's such a huge fan of Seinfeld's might discourage ASAN from approaching the comedian to do a fundraiser for them, but I don't know.
Compared to most on the spectrum though, I've had it quite good and have worked in the past and am pretty high-functioning though it has impaired my life to a significant degree. There are others with intellectual disabilities, who can't talk, engage in self-injurious behavior and smear feces on walls. I don't think it is helpful for celebrities such as this man to trivialize this condition which affects so many people.
Wednesday, October 29, 2014
Gadfly boos congressional letter and neurodiversity's and ASAN's dishonest talking points
With Halloween right around the corner, we see that neurodiversity and the autistic self advocacy network is still up to its dirty tricks without giving autistic people and their families any treats.
They've apparently lobbied five congress persons to write a letter on their behalf dishonestly claiming that autistic self advocates (a euphemism for neurodiversity proponents who oppose a cure for autism) are severely underrepresented in autism policy making recommendations in the federal government. ASAN recently published the linked post on their website in which they applaud the letter these five congresspersons wrote on their behalf.
The letter signed by these members of congress at ASAN's and neurodiversity's behest contains one absolutely false talking point:
The Inter-Agency Autism Coordinating Committee (IACC) housed at the National Institutes of Health (NIH), is the body tasked with developing the HHS Strategic Plan for Autism Research. The IACC currently has only two individuals on the autism spectrum and no member from a self advocacy organization out of fourteen public and twenty-eight total members.
The talking point that I've emphasized in the black highlight is blatantly false. The IACC currently has not two , but three individuals alleging to be on the autism spectrum: Scott Robertson (who helped start ASAN with Ne'eman, more about this later), John Elder Robison, and Noah Britton. The no member from a self-advocacy organization statement is also false since Scott Robertson is a member of ASAN and one of the top people in the organization, aside from Ari Ne'eman, ASAN's president. There have also been two other persons on the spectrum who have been on the IACC in the past, Ari Ne'eman and Stephen Shore, who have both opposed curing autism.
What is not a lie is that to date zero pro-cure, pro-treatment persons on the spectrum have been appointed to the public membership of the IACC. Of course, the old standard argument is that there are very few if any autistics who look upon autism as a disorder that needs treatment or possible cure or that none are able and willing to serve. This is also not true, as Roger Kulp, an individual with cerebral folate deficiency on the autism spectrum who is anti-neurodiversity and pro-treatment (I'll let Roger speak for himself as to whether or not he is pro or anti cure) has expressed an interest in being a public member of the IACC (as well as filling the vacancy for an autistic in an advisory position at Autism Speaks after John Robison tendered his resignation) yet has been completely shunned by Thomas Insel, the secretary of health and human services, autism speaks and other powers that be.
ASAN is only interested in having pro-neurodiversity and anti-cure and anti-treatment autistics serve in positions of power. So when they say all persons with autism this is also blatantly false.
Anyone who lives in the districts of the following five congress persons, I urge you to vote for their opponent in the upcoming election:
1. Jan Schakowsky. 2. Kathy Castor 3. Tammy Duckworth 4. Jackie Speier 5. Paul Tonko.
I can only wish these despicable members of the house of representatives could be voted out of office next week, but I realize that's an opium-induced dream, but here are their names for edification.
I doubt the congress people came up with these false statements out of thin air. They were supplied what were probably deliberate misstatements of fact by ASAN. It is very sad that these people have to stoop to dishonesty to get their way and close out sane people who want to end the pain and suffering that this horrible disorder causes. All I can say is booo hisss, razzz.
They've apparently lobbied five congress persons to write a letter on their behalf dishonestly claiming that autistic self advocates (a euphemism for neurodiversity proponents who oppose a cure for autism) are severely underrepresented in autism policy making recommendations in the federal government. ASAN recently published the linked post on their website in which they applaud the letter these five congresspersons wrote on their behalf.
The letter signed by these members of congress at ASAN's and neurodiversity's behest contains one absolutely false talking point:
The Inter-Agency Autism Coordinating Committee (IACC) housed at the National Institutes of Health (NIH), is the body tasked with developing the HHS Strategic Plan for Autism Research. The IACC currently has only two individuals on the autism spectrum and no member from a self advocacy organization out of fourteen public and twenty-eight total members.
The talking point that I've emphasized in the black highlight is blatantly false. The IACC currently has not two , but three individuals alleging to be on the autism spectrum: Scott Robertson (who helped start ASAN with Ne'eman, more about this later), John Elder Robison, and Noah Britton. The no member from a self-advocacy organization statement is also false since Scott Robertson is a member of ASAN and one of the top people in the organization, aside from Ari Ne'eman, ASAN's president. There have also been two other persons on the spectrum who have been on the IACC in the past, Ari Ne'eman and Stephen Shore, who have both opposed curing autism.
What is not a lie is that to date zero pro-cure, pro-treatment persons on the spectrum have been appointed to the public membership of the IACC. Of course, the old standard argument is that there are very few if any autistics who look upon autism as a disorder that needs treatment or possible cure or that none are able and willing to serve. This is also not true, as Roger Kulp, an individual with cerebral folate deficiency on the autism spectrum who is anti-neurodiversity and pro-treatment (I'll let Roger speak for himself as to whether or not he is pro or anti cure) has expressed an interest in being a public member of the IACC (as well as filling the vacancy for an autistic in an advisory position at Autism Speaks after John Robison tendered his resignation) yet has been completely shunned by Thomas Insel, the secretary of health and human services, autism speaks and other powers that be.
ASAN is only interested in having pro-neurodiversity and anti-cure and anti-treatment autistics serve in positions of power. So when they say all persons with autism this is also blatantly false.
Anyone who lives in the districts of the following five congress persons, I urge you to vote for their opponent in the upcoming election:
1. Jan Schakowsky. 2. Kathy Castor 3. Tammy Duckworth 4. Jackie Speier 5. Paul Tonko.
I can only wish these despicable members of the house of representatives could be voted out of office next week, but I realize that's an opium-induced dream, but here are their names for edification.
I doubt the congress people came up with these false statements out of thin air. They were supplied what were probably deliberate misstatements of fact by ASAN. It is very sad that these people have to stoop to dishonesty to get their way and close out sane people who want to end the pain and suffering that this horrible disorder causes. All I can say is booo hisss, razzz.
Wednesday, October 22, 2014
American Psychological Association gives John Elder Robison and neurodiversity the seal of approval
Neurodiversity has gained acceptance in a variety of places. Autism Speaks has funded rogue researchers Laurent Mottron and Isabelle Souleries. Ari Ne'eman, John Elder Robison, Noah Britton, and other members of this deranged cult have been appointed to government posts. Alex Plank was a keynote speaker at an Autism Society of America Conference. The ASA also endorsed Ari Ne'eman's appointment to the NCD. As can be seen on John Robison's twitter account, another organization has given them the seal of approval:
As can be seen by this tweet, the american psychological association has encouraged this inane philosophy that states that autism is not a disorder or disease (or even a disability according to some proponents) but an alternative form of brain wiring which can be completely or largely resolved with accommodations. What is even more bizarre is that a course taught by a high school dropout (at least as one of the teachers) is approved for continuing ed credit if you want to remain a licensed clinical psychologist.
I can't believe how outrageous this is. To me the term "neurodiversity" is just as offensive as the term "retard" is. It is a slap in the face to people on the spectrum and their loved ones who really suffer from this disability, unlike Robison who has stated that in spite of having an autism/asperger's diagnosis he has no disability of any kind. I hope that at some point the day will come where others are just as offended by this term as I am and the ND movement is censured by the government and organizations that should be trying to do things to help autistic people rather than trivializing it and insulting those of us who suffer from this affliction. I hope that at some point when people hear this foul word, they will be just as offended as hearing "retard" or the N word for a black person or the F word for a gay person.
The William & Mary Neurodiversity course we are doing Nov 8-9 at the Washington DC campus is now APA approved for 10 continuing ed credits
— John Elder Robison (@johnrobison) October 22, 2014
As can be seen by this tweet, the american psychological association has encouraged this inane philosophy that states that autism is not a disorder or disease (or even a disability according to some proponents) but an alternative form of brain wiring which can be completely or largely resolved with accommodations. What is even more bizarre is that a course taught by a high school dropout (at least as one of the teachers) is approved for continuing ed credit if you want to remain a licensed clinical psychologist.
I can't believe how outrageous this is. To me the term "neurodiversity" is just as offensive as the term "retard" is. It is a slap in the face to people on the spectrum and their loved ones who really suffer from this disability, unlike Robison who has stated that in spite of having an autism/asperger's diagnosis he has no disability of any kind. I hope that at some point the day will come where others are just as offended by this term as I am and the ND movement is censured by the government and organizations that should be trying to do things to help autistic people rather than trivializing it and insulting those of us who suffer from this affliction. I hope that at some point when people hear this foul word, they will be just as offended as hearing "retard" or the N word for a black person or the F word for a gay person.
Friday, October 17, 2014
Darius Mccollum in jail again, neurodiversity offers no solution
Old time readers of Autism's Gadfly will remember that I've previously written about Darius McCollum, the individual alleging to have Asperger's syndrome who has OCD and an uncontrollable desire to take joyrides in busses and trains. For the uninitiated, to recap briefly, McCollum spent a great deal of time learning about the new york city subway system and would hang out with personnel and learn all the ins and outs. He would spend time impersonating the subway drivers and actually drive the subways. When he wasn't doing this, he'd steal buses and drive them. He's been arrested multiple times for his offenses and has done some years of prison time. He knew what he was doing was wrong but could not help himself. Various medications to control his OCD didn't work. After serving time in prison, he was paroled.
Unfortunately, he's in the joint again for violating his parole. He missed two meetings with his parole officer. Neurodiversity still hasn't offered a solution to Mr. McCollum's dilemma. I'm still waiting.
Unfortunately, he's in the joint again for violating his parole. He missed two meetings with his parole officer. Neurodiversity still hasn't offered a solution to Mr. McCollum's dilemma. I'm still waiting.
Monday, October 6, 2014
cool new study by manuel casanova's group with TMS and neurofeedback
Those familiar with my novel, "The Mu Rhythm Bluff", know that I wrote a fictional account of a high-functioning individual with autism who undergoes a study involving neurofeedback (training to control certain types of brainwaves) and transcranial magnetic stimulation, a technique in which specific areas of the brain can be stimulated magnetically to induce or suppress the firing of neurons in the targeted area. Recently non-fiction has imitated my art in a study published by Manuel Casanova's research group.
As I wrote in my novel (and in a blog post) about how Mu rhythms are abnormal in autistic people and how they can be trained via neurofeedback and enabling autistic people to have improved functioning, at least according to one controlled study. Gamma is another type of brain wave that has been found to be aberrant in autistic people in various studies. Casanova's group has done studies showing brain abnormalities (particularly in a structure called the minicolumn) in the area of the dorsolateral prefrontal cortex of the brain. They've attempted to treat this by applying TMS to this area.
This current study is unique in that it is probably the first study of its kind that combines both neurofeedback and TMS to attempt to mitigate autistic symptomatology in a group of experimental subjects. The study used 42 autistic subjects. 20 of them were put into an experimental group that used combined neurofeedback therapy to improve gamma wave abnormalities accentuated by transcranial magnetic stimulation to the dorsolateral prefrontal cortex. The remaining subjects were placed in a waitlist control group. The subjects all had IQs greater than 80, so people with severe intellectual disability were excluded. Participants with a history of seizure disorder, genetic conditions, etc. were also excluded which I guess is common in a lot of studies like these. One of the interesting thing about the research subject pool is that it consisted of 34 males and 8 females which mirrors the male to female ratio of those on the spectrum in the general population of autistic people. More interestingly, the male to female ratio is probably even greater in a high-functioning group such as this where most of the participants have a normal or at least a near normal intelligence as measured by IQ test. So, if anything, there was a high preponderance of females in the study. This is in contrast with many studies such as this where nearly all or sometimes even all of the subjects are males.
The subjects in the treatment group had regular sessions of both TMS and neurofeedback. On evaluations using portions of the aberrant behavior checklist and Repetitive Behavior Scale, the treatment subjects improved far more than the waitlist controls. Also their gamma function was improved over the controls as well as responses to various event related potential tests.
Though interesting, the study seemed to have a few problems and limitations. The group was rated on these measures both by caretakers and a trained psychologist. The authors neglected to mention whether the raters were blinded to the identities of who was in the treatment group and who was in the waitlist group. I emailed Dr. C asking him about this and he told me that the psychologist who did the ratings was blind to the purpose of the experiment, but I'm not sure if that means whether or not he knew there was an experiment and knew who was in the waitlist group and the treatment group. I'm not sure if the caretakers knew whether or not their charge was in the control group or the waitlist group. I neglected to ask Dr. Casanova about this and it is unclear to me. I'm not sure how reliable caretaker and parental ratings are as they are often subjective and biased and seem to want to believe their child is improving when that is not necessarily the case.
Another problem is that assignment to the experimental and control groups were not really randomized as there were factors and treatment choices that influenced whether a subject went into a waitlist group or treatment group. I'm not sure how much if at all this affected the outcome of the study, but Casanova and company admitted to this and stated they hoped to do a more randomized trial at some point.
Ideally, subjects would be placed in treatment and control groups at random with the control group using a sham treatment and the experimental group receiving the real treatment. This is how I had them do it in "The Mu Rhythm Bluff". In the real world, however, there are practical limitations in that sham TMS treatment has been easily identified by persons in control groups and has not really been practical. I'm not sure if sham neurofeedback is feasible. Also, there may be ethical considerations in randomizing people in a study where controls would arbitrarily be deprived of a beneficial treatment.
Another problem that the group acknowledged was that the TMS was more limited than in other treatment protocols such as those with adults being treated for depression with TMS. The group was comprised largely of children (ranging in age from 10 to 21 years old with the average age being about 14-1/2), so they thought that the children might be more vulnerable to an intense treatment.
Another issue I'm curious about is that not only has Casanova found minicolumn abnormalities in the frontal and temporal areas of the brain, but also in the anterior cingulate area. I'm not sure if TMS of this area was used or not and whether that would factor into the results or if an experiment might need to be modified to account for this. Not only have Casanova et. al. chosen the dorsolateral prefontal cortex to stimulate with TMS because of the minicolumn abnormalities found there, but also because it has rich interconnections to other brain areas that will help with the so-called cascading effect that TMS has so other areas of the brain will be influenced. I write a bit more about this below.
I also wonder if there will be any long term follow-up of these kids into adulthood where we can really assess the benefits of this treatment. We will see if they can complete college, find a good job, get married, etc. (In other words, do a lot of things normal adults do that the majority of persons on the spectrum won't be able to do without treatment). Logistically, it may be hard to follow people into adult years. This may have been the problem in Lovaas (1987) where attempts were made to follow the children into adulthood and funding granted for this purpose and informal presentations made at conferences but no actual studies reported on what happened to the kids as adults and if they maintained the so-called normal functioning.
Another issue I'm curious about is whether other structures of the brain besides the dorsolateral prefrontal cortex will be influenced. Though TMS is very specific for what areas of the brain can be stimulated, the magnet only covers a couple of inches within the cerebral cortex and won't go to deep layers of the brain where areas of the limbic system such as the amygdala and hippocampus are located. Of course, Dr. C has written about a so-called cascading effect of TMS where various parts of the brain are interconnected and can influence each other so that this treatment might influence the structures that are deeper within the brain and not just on the surface of the cerebral cortex. I didn't write to Dr. C about this, but on a side note, I did ask him a question about whether the pyramidal cells in the prefrontal cortex thought to be involved in autism were connected to the nucleus accumbens which is an area of the brain involved in pleasurable activities such as drug use. I knew that some of those were connected to the NA and thought that perhaps they were inhibitory cells that contained GABA as a neurotransmitter which had been found to be deficient in the minicolumns that Casanova had found to be abnormal. I thought that perhaps this could explain my twiddling (self-stimulatory behavior) in that there was some hidden motor pleasure center that was inhibited by GABA in typical people whose prefrontal cells were connected to the nucleus accumbens. He told me that the pyramidal cells did in fact have connections to the nucleus accumbens but they were excitatory cells that did not use GABA as a neurotransmitter. So, I guess that's one straw I've been gasping at to find out what is wrong with myself that did not work out.
And, of course, another limitation was the use of higher functioning autistics. We have to wonder how persons with IQs below 80 would respond to paradigms such as this one. This is a problem rampant in autism research and not just particular to this study. There are compliance issues with people on the lower end of the spectrum and other problems that would make them unsuitable as research subjects given the current state of the art.
For years, I've wondered why I have these symptoms. If, in fact, it is due to some sort of dysfunction in the brain, how is my brain different. Why do I have to twiddle, have motor coordination problems, social problems impairing my ability to relate to people and a fear of birds and dogs I am not familiar with? Also, is it possible some sort of neuromodulation of the type that the Casanova group is experimenting with that could help these problems in me and also people like myself. I have to ponder all this, thinking I've come upon some new thing that will enable me to understand myself and help me and everytime I seem to come to a dead end. I don't know if research in neuromodulation such as this will help, but I find it very intriguing and I hope to be able to follow it and understand as much of it as possible, even given the limitations my disability puts upon me.
As I wrote in my novel (and in a blog post) about how Mu rhythms are abnormal in autistic people and how they can be trained via neurofeedback and enabling autistic people to have improved functioning, at least according to one controlled study. Gamma is another type of brain wave that has been found to be aberrant in autistic people in various studies. Casanova's group has done studies showing brain abnormalities (particularly in a structure called the minicolumn) in the area of the dorsolateral prefrontal cortex of the brain. They've attempted to treat this by applying TMS to this area.
This current study is unique in that it is probably the first study of its kind that combines both neurofeedback and TMS to attempt to mitigate autistic symptomatology in a group of experimental subjects. The study used 42 autistic subjects. 20 of them were put into an experimental group that used combined neurofeedback therapy to improve gamma wave abnormalities accentuated by transcranial magnetic stimulation to the dorsolateral prefrontal cortex. The remaining subjects were placed in a waitlist control group. The subjects all had IQs greater than 80, so people with severe intellectual disability were excluded. Participants with a history of seizure disorder, genetic conditions, etc. were also excluded which I guess is common in a lot of studies like these. One of the interesting thing about the research subject pool is that it consisted of 34 males and 8 females which mirrors the male to female ratio of those on the spectrum in the general population of autistic people. More interestingly, the male to female ratio is probably even greater in a high-functioning group such as this where most of the participants have a normal or at least a near normal intelligence as measured by IQ test. So, if anything, there was a high preponderance of females in the study. This is in contrast with many studies such as this where nearly all or sometimes even all of the subjects are males.
The subjects in the treatment group had regular sessions of both TMS and neurofeedback. On evaluations using portions of the aberrant behavior checklist and Repetitive Behavior Scale, the treatment subjects improved far more than the waitlist controls. Also their gamma function was improved over the controls as well as responses to various event related potential tests.
Though interesting, the study seemed to have a few problems and limitations. The group was rated on these measures both by caretakers and a trained psychologist. The authors neglected to mention whether the raters were blinded to the identities of who was in the treatment group and who was in the waitlist group. I emailed Dr. C asking him about this and he told me that the psychologist who did the ratings was blind to the purpose of the experiment, but I'm not sure if that means whether or not he knew there was an experiment and knew who was in the waitlist group and the treatment group. I'm not sure if the caretakers knew whether or not their charge was in the control group or the waitlist group. I neglected to ask Dr. Casanova about this and it is unclear to me. I'm not sure how reliable caretaker and parental ratings are as they are often subjective and biased and seem to want to believe their child is improving when that is not necessarily the case.
Another problem is that assignment to the experimental and control groups were not really randomized as there were factors and treatment choices that influenced whether a subject went into a waitlist group or treatment group. I'm not sure how much if at all this affected the outcome of the study, but Casanova and company admitted to this and stated they hoped to do a more randomized trial at some point.
Ideally, subjects would be placed in treatment and control groups at random with the control group using a sham treatment and the experimental group receiving the real treatment. This is how I had them do it in "The Mu Rhythm Bluff". In the real world, however, there are practical limitations in that sham TMS treatment has been easily identified by persons in control groups and has not really been practical. I'm not sure if sham neurofeedback is feasible. Also, there may be ethical considerations in randomizing people in a study where controls would arbitrarily be deprived of a beneficial treatment.
Another problem that the group acknowledged was that the TMS was more limited than in other treatment protocols such as those with adults being treated for depression with TMS. The group was comprised largely of children (ranging in age from 10 to 21 years old with the average age being about 14-1/2), so they thought that the children might be more vulnerable to an intense treatment.
Another issue I'm curious about is that not only has Casanova found minicolumn abnormalities in the frontal and temporal areas of the brain, but also in the anterior cingulate area. I'm not sure if TMS of this area was used or not and whether that would factor into the results or if an experiment might need to be modified to account for this. Not only have Casanova et. al. chosen the dorsolateral prefontal cortex to stimulate with TMS because of the minicolumn abnormalities found there, but also because it has rich interconnections to other brain areas that will help with the so-called cascading effect that TMS has so other areas of the brain will be influenced. I write a bit more about this below.
I also wonder if there will be any long term follow-up of these kids into adulthood where we can really assess the benefits of this treatment. We will see if they can complete college, find a good job, get married, etc. (In other words, do a lot of things normal adults do that the majority of persons on the spectrum won't be able to do without treatment). Logistically, it may be hard to follow people into adult years. This may have been the problem in Lovaas (1987) where attempts were made to follow the children into adulthood and funding granted for this purpose and informal presentations made at conferences but no actual studies reported on what happened to the kids as adults and if they maintained the so-called normal functioning.
Another issue I'm curious about is whether other structures of the brain besides the dorsolateral prefrontal cortex will be influenced. Though TMS is very specific for what areas of the brain can be stimulated, the magnet only covers a couple of inches within the cerebral cortex and won't go to deep layers of the brain where areas of the limbic system such as the amygdala and hippocampus are located. Of course, Dr. C has written about a so-called cascading effect of TMS where various parts of the brain are interconnected and can influence each other so that this treatment might influence the structures that are deeper within the brain and not just on the surface of the cerebral cortex. I didn't write to Dr. C about this, but on a side note, I did ask him a question about whether the pyramidal cells in the prefrontal cortex thought to be involved in autism were connected to the nucleus accumbens which is an area of the brain involved in pleasurable activities such as drug use. I knew that some of those were connected to the NA and thought that perhaps they were inhibitory cells that contained GABA as a neurotransmitter which had been found to be deficient in the minicolumns that Casanova had found to be abnormal. I thought that perhaps this could explain my twiddling (self-stimulatory behavior) in that there was some hidden motor pleasure center that was inhibited by GABA in typical people whose prefrontal cells were connected to the nucleus accumbens. He told me that the pyramidal cells did in fact have connections to the nucleus accumbens but they were excitatory cells that did not use GABA as a neurotransmitter. So, I guess that's one straw I've been gasping at to find out what is wrong with myself that did not work out.
And, of course, another limitation was the use of higher functioning autistics. We have to wonder how persons with IQs below 80 would respond to paradigms such as this one. This is a problem rampant in autism research and not just particular to this study. There are compliance issues with people on the lower end of the spectrum and other problems that would make them unsuitable as research subjects given the current state of the art.
For years, I've wondered why I have these symptoms. If, in fact, it is due to some sort of dysfunction in the brain, how is my brain different. Why do I have to twiddle, have motor coordination problems, social problems impairing my ability to relate to people and a fear of birds and dogs I am not familiar with? Also, is it possible some sort of neuromodulation of the type that the Casanova group is experimenting with that could help these problems in me and also people like myself. I have to ponder all this, thinking I've come upon some new thing that will enable me to understand myself and help me and everytime I seem to come to a dead end. I don't know if research in neuromodulation such as this will help, but I find it very intriguing and I hope to be able to follow it and understand as much of it as possible, even given the limitations my disability puts upon me.
Wednesday, September 24, 2014
Ari Ne'eman and ASAN try to take over CARES act and exclude pro-cure autistics
The government has now taken the side of the neurodiversity movement after passage of the CARES (not interested in repeating the assinine acronym) act which was formerly entitled The combating autism act. The feds responded to all the pro-neurodiverse individuals who are against the ultimate goal of curing autism. The government agreed with them and changed the name of the law.
However, Ari Ne'eman and ASAN are well aware of the truism first stated by Shakespeare what's in a name? Though a rose by any other name smells equally foul, ASAN and Ne'eman have now come out with an action alert with the ironic title Will Your member of congress support autistic people.
They've also persuaded neurodiverse congresswoman Jan Schakowsky to write a letter to the secretary of HHS and the head of the national institute of health urging them to allow anti-cure autistics who want people like me to be crippled and sick and lonely and in dire straights unless we have parents to support us to dictate autism policy and ensure that only people who have alleged autism and believe in neurodiversity to dictate government autism policy and exclude those of us who wish for a cure for autism and believe autism is a disorder and not just a social disability.
Interestingly, the letter was written by a staffer of Schakowsky's named Waverly Gordon who's so appalling ignorant of the issues at hand, he makes the false statement that only two autistics are on the IACC. When in fact three people alleging to be on the spectrum (Noah Britton, John Robison, and Scott Robertson) currently serve on the public membership of the IACC. All three of these people are pro-neurodiversity and anti-cure and so far zero anti-neurodiversity pro-cure autistics have been appointed to the public membership. Waverly also stated that no members of self-advocacy organizations served, though Robertson is one of the executive directors of ASAN.
I'd like to answer Ne'eman's question Will your member of congress support autistic people. The answer is no. Since they are no longer combating autism, they don't give a shit about us and how much we are suffering and how much autism needs to be combated and a cure found at some point in time. At least 99.9% of people with autism will never be lawyers, college professors, Ph.D. candidates in computer science or young kids with influential parents who can start a 501(c) organization and pay themselves a $65,000 a year salary. Congress does not care about real autistic people (or at least autistic people who are afflicted by their disability, unlike most members of ASAN), so the answer to the question is no.
However, Ari Ne'eman and ASAN are well aware of the truism first stated by Shakespeare what's in a name? Though a rose by any other name smells equally foul, ASAN and Ne'eman have now come out with an action alert with the ironic title Will Your member of congress support autistic people.
They've also persuaded neurodiverse congresswoman Jan Schakowsky to write a letter to the secretary of HHS and the head of the national institute of health urging them to allow anti-cure autistics who want people like me to be crippled and sick and lonely and in dire straights unless we have parents to support us to dictate autism policy and ensure that only people who have alleged autism and believe in neurodiversity to dictate government autism policy and exclude those of us who wish for a cure for autism and believe autism is a disorder and not just a social disability.
Interestingly, the letter was written by a staffer of Schakowsky's named Waverly Gordon who's so appalling ignorant of the issues at hand, he makes the false statement that only two autistics are on the IACC. When in fact three people alleging to be on the spectrum (Noah Britton, John Robison, and Scott Robertson) currently serve on the public membership of the IACC. All three of these people are pro-neurodiversity and anti-cure and so far zero anti-neurodiversity pro-cure autistics have been appointed to the public membership. Waverly also stated that no members of self-advocacy organizations served, though Robertson is one of the executive directors of ASAN.
I'd like to answer Ne'eman's question Will your member of congress support autistic people. The answer is no. Since they are no longer combating autism, they don't give a shit about us and how much we are suffering and how much autism needs to be combated and a cure found at some point in time. At least 99.9% of people with autism will never be lawyers, college professors, Ph.D. candidates in computer science or young kids with influential parents who can start a 501(c) organization and pay themselves a $65,000 a year salary. Congress does not care about real autistic people (or at least autistic people who are afflicted by their disability, unlike most members of ASAN), so the answer to the question is no.
Tuesday, September 2, 2014
Kelly Stapleton pleads guilty to attempted murder
I've just read that Kelly Stapleton who attempted to kill her autistic daughter has pleaded guilty to the crime. I hope this makes Neurodiversity happy. But I guess nothing short of Ms. Stapleton's execution would please them. Nearly a year ago I wrote a blog post where I discussed this sad case and Ari Ne'eman's reaction to it. Ms. Stapleton had initially contemplated entering an insanity plea, but I guess she either didn't want to drag her family through the ordeal or she realized she had no chance of having it fly. I find it ironic that an organization like ASAN comprised of at least one lawyer, at least one college professor, and graduate students alleging to be on the autistic spectrum and don't seem to do anything to help lower functioning autistics such as Ms. Stapleton's daughter would take such an interest in the case. Before the media made much of the Stapleton affair last year, Ari Ne'eman and his ilk neglected to comment on the quality of life of nonverbal, violent persons on the spectrum who are at the polar opposite of Meg Evans, Melanie Yergeau, and computer science Ph.D. candidate Scott Robertson. To the best of my knowledge, they never proposed any solutions to the problems of individuals such as Izzy Stapleton, but only stating that a cure for individuals such as these would be tantamount to eugenics.
Ne'eman seemed skeptical that the justice system would do their job. I realize it is premature to say whether this is the case or not as the woman has not yet been sentenced and we don't know what her punishment, if any, will be. Apparently, she was prosecuted and had no legitimate defense other than alleged insanity which she chose not to invoke. So apparently Ne'eman's allegation that the media were claiming that it is okay for parents to kill their autistic children didn't stop Ms. Stapleton's being charged with a crime.
I still wonder why an organization such as ASAN which as of 2011 had 501(c) status can't work to solicit donations so that services exist which may have prevented this tragedy from happening. This is not to condone what Ms. Stapleton did, but there are still a lot of things I don't understand.
Ne'eman seemed skeptical that the justice system would do their job. I realize it is premature to say whether this is the case or not as the woman has not yet been sentenced and we don't know what her punishment, if any, will be. Apparently, she was prosecuted and had no legitimate defense other than alleged insanity which she chose not to invoke. So apparently Ne'eman's allegation that the media were claiming that it is okay for parents to kill their autistic children didn't stop Ms. Stapleton's being charged with a crime.
I still wonder why an organization such as ASAN which as of 2011 had 501(c) status can't work to solicit donations so that services exist which may have prevented this tragedy from happening. This is not to condone what Ms. Stapleton did, but there are still a lot of things I don't understand.
Wednesday, August 27, 2014
Kim Bodner's RPM vs. Wechsler Study published. What does this mean for neurodiversity?
As many in the autism community know, about seven years ago, Michelle Dawson published a study suggesting that the intelligence of autistics had been underestimated. She compared the scores of autistics on the Wechsler IQ test versus scores on the Raven's progressive matrices. On average, the autistics' scores on the Raven's were considerably higher than their Wechsler. By comparison, a control group of non-autistic people had similar scores on the two tests. The neurodiversity movement made much of this, claiming this proved that autistics' intelligence had been underestimated and it showed that "autistics were not write-offs" (Dawson's words) after all. The media reported that intelligence had been underestimated in autistics.
Some years after this, I was interested to find out that two different research studies had seemed to fail to replicate her results. Both of them had been presented at IMFAR (International Meeting for Autism Research) but had not yet been published in peer reviewed journals. I read the brief presentations, but I was still uncertain about everything the studies would say if they were published in a journal.
The first one had been published by Sven Boelte. I wrote to Dr. Boelte asking him if I could have a copy of the study and he graciously emailed me one. Like Dawson, he found that autistics scored higher on the RPM than on the Wechsler, but the magnitude was not as pronounced as in Dawson's study and it was only found in those with IQ's lower than 85 and not at all in autistic persons with higher measured intelligence. In contrast to Dawson's optimistic statements and those of the pro-neurodiversity media, he gave the more guarded response that it was still too early to tell if intelligence in autistic people had been underestimated and more work needed to be done on the issue.
The other study was done by Kim Bodner, who I believe at the time was a graduate student working in Nancy Minshew's lab. From reading about the IMFAR presentation, she seemed to be saying that she had found no differences in the scores of the RPM vs. the Wechsler in individuals on the spectrum with normal or near normal intelligence. Though her study had not been formally published, I also wrote to her and cc'd a copy to Nancy Minshew. I never received a response from Bodner, but Dr. Minshew wrote me saying she forwarded a copy to Ms. Bodner and they'd let me know when the study was published. This was over four years ago.
Today, I was surprised to receive an email from Ms. Bodner out of the blue, sending me a copy of the .pdf study. It took awhile, but eventually her study was published. I'd wondered if it would ever be published and I found out today. For anyone inclined to read the entire study, I've uploaded it here
She had studied four groups--autistic children (up to age 16) vs. age matched controls and adults on the spectrum (17 and up) compared to a control group. She found that in the children with autism the RPM scores were higher than their performance IQs and slightly (but not much) higher than their verbal IQs. The RPM's of the autistics were higher than the age and Wechsler matched controls but not much so.
The more striking difference was in the adult group where the RPM of the autistics was much lower than their Wechsler scores and the scores of the RPM of the adult control group. These findings don't seem to replicate Michelle Dawson's.
It must be emphasized that Bodner's study had the limitations in that there were only two girls in the 37 person children with autism group and 5 girls in the 48 person typical group. The adult group (where the RPM was low compared to other measures) had a 25:6 male:female composition of the 31 autistic subjects which is probably representative of the ratio in the general population of those on the spectrum. It would be curious as to how a representative ratio of males to females in the children's group would fare on the RPM. Also, the autistic subjects were all relatively high functioning (meaning they had IQs in the average or near average range).
The results of various studies support that on average there are higher scores on the RPM than on Wechsler for lower functioning autistic children who have lower than average intelligence and less verbal ability. But for the higher functioning more verbal autistic children, there does not seem to be any advantage on the RPM.
For adults on the spectrum, the findings of various studies are less consistent.
If there is any advantage at all on the RPM, it is probably for the lower functioning children who would probably have life problems no matter what intervention or educational strategy is used. I believe this is more evidence that the ND movement is mistaken that certain tests or abilities are not only superior in all persons with autism, but that this proves they have special strengths in jobs or any other endeavor.
Some years after this, I was interested to find out that two different research studies had seemed to fail to replicate her results. Both of them had been presented at IMFAR (International Meeting for Autism Research) but had not yet been published in peer reviewed journals. I read the brief presentations, but I was still uncertain about everything the studies would say if they were published in a journal.
The first one had been published by Sven Boelte. I wrote to Dr. Boelte asking him if I could have a copy of the study and he graciously emailed me one. Like Dawson, he found that autistics scored higher on the RPM than on the Wechsler, but the magnitude was not as pronounced as in Dawson's study and it was only found in those with IQ's lower than 85 and not at all in autistic persons with higher measured intelligence. In contrast to Dawson's optimistic statements and those of the pro-neurodiversity media, he gave the more guarded response that it was still too early to tell if intelligence in autistic people had been underestimated and more work needed to be done on the issue.
The other study was done by Kim Bodner, who I believe at the time was a graduate student working in Nancy Minshew's lab. From reading about the IMFAR presentation, she seemed to be saying that she had found no differences in the scores of the RPM vs. the Wechsler in individuals on the spectrum with normal or near normal intelligence. Though her study had not been formally published, I also wrote to her and cc'd a copy to Nancy Minshew. I never received a response from Bodner, but Dr. Minshew wrote me saying she forwarded a copy to Ms. Bodner and they'd let me know when the study was published. This was over four years ago.
Today, I was surprised to receive an email from Ms. Bodner out of the blue, sending me a copy of the .pdf study. It took awhile, but eventually her study was published. I'd wondered if it would ever be published and I found out today. For anyone inclined to read the entire study, I've uploaded it here
She had studied four groups--autistic children (up to age 16) vs. age matched controls and adults on the spectrum (17 and up) compared to a control group. She found that in the children with autism the RPM scores were higher than their performance IQs and slightly (but not much) higher than their verbal IQs. The RPM's of the autistics were higher than the age and Wechsler matched controls but not much so.
The more striking difference was in the adult group where the RPM of the autistics was much lower than their Wechsler scores and the scores of the RPM of the adult control group. These findings don't seem to replicate Michelle Dawson's.
It must be emphasized that Bodner's study had the limitations in that there were only two girls in the 37 person children with autism group and 5 girls in the 48 person typical group. The adult group (where the RPM was low compared to other measures) had a 25:6 male:female composition of the 31 autistic subjects which is probably representative of the ratio in the general population of those on the spectrum. It would be curious as to how a representative ratio of males to females in the children's group would fare on the RPM. Also, the autistic subjects were all relatively high functioning (meaning they had IQs in the average or near average range).
The results of various studies support that on average there are higher scores on the RPM than on Wechsler for lower functioning autistic children who have lower than average intelligence and less verbal ability. But for the higher functioning more verbal autistic children, there does not seem to be any advantage on the RPM.
For adults on the spectrum, the findings of various studies are less consistent.
If there is any advantage at all on the RPM, it is probably for the lower functioning children who would probably have life problems no matter what intervention or educational strategy is used. I believe this is more evidence that the ND movement is mistaken that certain tests or abilities are not only superior in all persons with autism, but that this proves they have special strengths in jobs or any other endeavor.
Monday, August 18, 2014
Is starting a business a solution to autistic unemployment?
As of late, there have been a few articles in the media I've located via entering "autism" as a search in Google news. These pieces deal with entrepreneurship as one solution to the problem of autistic unemployment. this article is one example, reporting on two different individuals on the spectrum that started their own business.
Yet another article which features the renowned Temple Grandin's photo as a lead-in, also extols supposed autistic strengths, such as the oft-repeated excellent attention to details that persons on the spectrum supposedly have. The article claims this makes people with autism suited for various occupations, but is rather vague on what these specific professions are and how superior attention to details can help autistic people start their own businesses and actually make a gainful living. One of the individuals mentioned in both articles has a son who started a yard work and landscaping company and apparently relies on an assistant to help him with this endeavor. How yard work is suited for someone with attention to detail I don't understand.
Temple Grandin has weighed in, stating that if more autistic people are allowed to develop their talents and interests, they can start their own business. Autism Speaks has had town meetings where they've encouraged people on the spectrum to start their own businesses. This is interesting from an organization almost completely lacking in transparency as to whether or not they employ people on the spectrum in their organization.(I realize Kerry Magroo and perhaps one or two others are exceptions to this rule).
A short time ago, I wrote a blog post where I discussed one of the possible origins of the "attention to details" mantra and why it may not actually be valid for most persons on the spectrum, let alone assisting them in employment.
I've actually had first hand experience with this as an individual on the spectrum who has attempted to start my own business. In the mid eighties, after I'd been forced to resign from my clerical position at the local phone company, I attempted to start a typing and word processing business. I lived close to UCLA at the time (I've since moved) which was a prime location for this set up as there are a number of college students who would be potential customers. I advertised in the daily bruin (UCLA paper) and other places and had some customers. Though some people were satisfied with my work, others weren't and I lost some clients. The students usually waited to the last minute before their papers were due to finish them, so the turnaround times were horrendously short. In addition to the dissatisfied customers, having to accommodate the people was tremendously aggravating and it was far more stressful than having a job with regular hours. I had a really tough time and finally called it quits and started learning medical transcription around 1986 which I worked in sporadically from about 1987-1988 to about 2006. My supposed "attention to details" did not help.
Aside from having a disability that might make this difficult, how do non-handicapped people typically fare when starting a business? I had a friend who was a tree surgeon. In fact he learned the trade from his father who had a successful tree company starting when he was quite young. In his twenties, he decided to start his own business. He had a very hard time, it took him quite a while to establish a clientele and he had trouble paying a lot of his bills. Many times he contemplated whether it was worth doing and whether or not he should just drop his business and go out and get a job.
Eventually he was able to establish a reasonably successful tree company, but it took several years of capital investment and hard work.
According to oft-cited statistics80% of all businesses fail within the first 18 months of their existence.
Starting a business requires hard work, capital outlay and probably excellent social skills (which are saliently lacking in most autistic persons). It is really tough going for a non-handicapped person. Is it realistic for most autistic people? Gadfly doesn't think so.
Yet another article which features the renowned Temple Grandin's photo as a lead-in, also extols supposed autistic strengths, such as the oft-repeated excellent attention to details that persons on the spectrum supposedly have. The article claims this makes people with autism suited for various occupations, but is rather vague on what these specific professions are and how superior attention to details can help autistic people start their own businesses and actually make a gainful living. One of the individuals mentioned in both articles has a son who started a yard work and landscaping company and apparently relies on an assistant to help him with this endeavor. How yard work is suited for someone with attention to detail I don't understand.
Temple Grandin has weighed in, stating that if more autistic people are allowed to develop their talents and interests, they can start their own business. Autism Speaks has had town meetings where they've encouraged people on the spectrum to start their own businesses. This is interesting from an organization almost completely lacking in transparency as to whether or not they employ people on the spectrum in their organization.(I realize Kerry Magroo and perhaps one or two others are exceptions to this rule).
A short time ago, I wrote a blog post where I discussed one of the possible origins of the "attention to details" mantra and why it may not actually be valid for most persons on the spectrum, let alone assisting them in employment.
I've actually had first hand experience with this as an individual on the spectrum who has attempted to start my own business. In the mid eighties, after I'd been forced to resign from my clerical position at the local phone company, I attempted to start a typing and word processing business. I lived close to UCLA at the time (I've since moved) which was a prime location for this set up as there are a number of college students who would be potential customers. I advertised in the daily bruin (UCLA paper) and other places and had some customers. Though some people were satisfied with my work, others weren't and I lost some clients. The students usually waited to the last minute before their papers were due to finish them, so the turnaround times were horrendously short. In addition to the dissatisfied customers, having to accommodate the people was tremendously aggravating and it was far more stressful than having a job with regular hours. I had a really tough time and finally called it quits and started learning medical transcription around 1986 which I worked in sporadically from about 1987-1988 to about 2006. My supposed "attention to details" did not help.
Aside from having a disability that might make this difficult, how do non-handicapped people typically fare when starting a business? I had a friend who was a tree surgeon. In fact he learned the trade from his father who had a successful tree company starting when he was quite young. In his twenties, he decided to start his own business. He had a very hard time, it took him quite a while to establish a clientele and he had trouble paying a lot of his bills. Many times he contemplated whether it was worth doing and whether or not he should just drop his business and go out and get a job.
Eventually he was able to establish a reasonably successful tree company, but it took several years of capital investment and hard work.
According to oft-cited statistics80% of all businesses fail within the first 18 months of their existence.
Starting a business requires hard work, capital outlay and probably excellent social skills (which are saliently lacking in most autistic persons). It is really tough going for a non-handicapped person. Is it realistic for most autistic people? Gadfly doesn't think so.
Sunday, August 3, 2014
Organizations to boycott if you don't like neurodiversity and ASAN
Recently, people who did not like the vaccine causes autism movement urged a boycott of Chili's restaurants when they created a fundraiser to help one of their organizations. The backlash was so great Chili's was forced to cancel their fundraising event.
Those who don't like Autism Speaks (most of whom have some affiliation with neurodiversity and or ASAN) have suggested boycotting organizations that support AS such as Lindt Chocolates. Over five years ago, I wrote a blog post mentioning other organizations they could boycott if they did not want to support AS. Recently supporters of a boycott Autism Speaks Movement have asked Big Bird and the rest of Sesame Street to end their partnership with AS. To the best of my knowledge though, no one has suggested boycotting Wrong Planet, Alex Plank, Jack ("Cubby") Robison, Michelle Dawson, or Laurent Mottron and his other affiliates for accepting funding from AS.
In my previous blog post of a few days ago, I pointed out that ASAN (The Autistic Self-Advocacy Network) had posted their 2011 and 2012 990 tax forms on line and Ari Ne'eman's substantial salary increase. I neglected to mention the various organizations that have donated money to ASAN and the one other one who has enlisted high school dropout John Robison to teach a course on Neurodiversity on their faculty:
1. Dan Moreno Foundation
2. Cafe Press
3. Mitsubishi Corporation
4. The arc (charity giving sizable donation to ASAN)
5. Daniel Jordan Fiddle Foundation.
6. Enterprise Service and Technologies.
7. William and Mary College (not necessarily relevant to ASAN but gives a course on neurodiversity with high school dropout John Robison being one of the adjunct professors)
8. University of New Hampshire
9. Oregon Health Sciences University
10.Special Hope Foundation.
11. The HSC Foundation.
These are all organizations that should be boycotted or not have money donated to them or products purchased from if you want to crusade against ASAN and the neurodiversity movement. There may be others that I don't know about and I will post them if I find out about them. I know I won't be purchasing products made by Cafe Press or Mitsubishi again. I'm not sure if it is worth contacting any of these organizations and asking them not to partner with Neurodiversity in the future as some of these probably gave ASAN one time donations and may not do so in the future. Apparently, from reading their 990's, their donations dropped off tremendously in 2012 but they made up their revenue by making nearly $200,000 in "contract services" in 2012 whatever those are. So this is the list if anyone is interested.
Those who don't like Autism Speaks (most of whom have some affiliation with neurodiversity and or ASAN) have suggested boycotting organizations that support AS such as Lindt Chocolates. Over five years ago, I wrote a blog post mentioning other organizations they could boycott if they did not want to support AS. Recently supporters of a boycott Autism Speaks Movement have asked Big Bird and the rest of Sesame Street to end their partnership with AS. To the best of my knowledge though, no one has suggested boycotting Wrong Planet, Alex Plank, Jack ("Cubby") Robison, Michelle Dawson, or Laurent Mottron and his other affiliates for accepting funding from AS.
In my previous blog post of a few days ago, I pointed out that ASAN (The Autistic Self-Advocacy Network) had posted their 2011 and 2012 990 tax forms on line and Ari Ne'eman's substantial salary increase. I neglected to mention the various organizations that have donated money to ASAN and the one other one who has enlisted high school dropout John Robison to teach a course on Neurodiversity on their faculty:
1. Dan Moreno Foundation
2. Cafe Press
3. Mitsubishi Corporation
4. The arc (charity giving sizable donation to ASAN)
5. Daniel Jordan Fiddle Foundation.
6. Enterprise Service and Technologies.
7. William and Mary College (not necessarily relevant to ASAN but gives a course on neurodiversity with high school dropout John Robison being one of the adjunct professors)
8. University of New Hampshire
9. Oregon Health Sciences University
10.Special Hope Foundation.
11. The HSC Foundation.
These are all organizations that should be boycotted or not have money donated to them or products purchased from if you want to crusade against ASAN and the neurodiversity movement. There may be others that I don't know about and I will post them if I find out about them. I know I won't be purchasing products made by Cafe Press or Mitsubishi again. I'm not sure if it is worth contacting any of these organizations and asking them not to partner with Neurodiversity in the future as some of these probably gave ASAN one time donations and may not do so in the future. Apparently, from reading their 990's, their donations dropped off tremendously in 2012 but they made up their revenue by making nearly $200,000 in "contract services" in 2012 whatever those are. So this is the list if anyone is interested.
Wednesday, July 30, 2014
Neurodiversity can be profitable: Ari Ne'eman gives himself a large payraise
Neurodiversity remains a controversial movement and people on both sides of the fence have made a variety of statements about it. To some it is about basic human rights and/or civil rights for people on the autism spectrum or who have related neurologic disabilities (or differences for those who prefer that term). Some have said it means an alternative form of brain wiring that is just a natural human variation the way eye color is. To some parents of autistic children it is people stating that they don't really love their children as these parents have not accepted their offspring. To those who oppose it, it's about not finding a cure or treatments that they desire. To others, it is a claim that with the correct accommodations autism would largely cease to be disabling to those who have it (as well as other brain differences). It can also be financially profitable, at least if your name is Ari Ne'eman.
As recently as 2009, ASAN supporter "the autistic bitch from hell" (who has been rumored to be an alter-ego for ASAN board member Meg Evans) stated in the comments section of this blog post that the board of directors of ASAN, including Ne'eman himself, worked entirely on a pro bono basis and received no compensation whatsoever. This apparently changed just a couple of years later as of 2011. I've learned that ASAN recently posted their 2012 tax return online. They've also posted their 2011 return as well. I don't know if they've posted any tax returns of previous years anywhere on line, but if I find out they have I will write a new post or put an addendum on this one.
On reading the two returns, we see that while all of ASAN's board members, with the exception of Ne'eman, continued to be paid no compensation, Ne'eman drew a salary of $40,000 a year for serving as president of ASAN in 2011. In 2012, he raised his own pay to $65,000, a 62% annual salary increase which is as high an annual pay raise I suspect that most Americans would be glad to have, particularly in these recessionary times.
It could be argued that if Ne'eman's work had brought in a proportional increase of funding and donations then he would deserve this hefty pay increase. On perusal of ASAN's revenues for the years 2011 and 2012 we see there was an increase in ASAN's revenues of about $280,000 (rounded to the most even figures) to about $376,000. A 31% increase which is about half the percentage that Ne'eman raised his own salary.
Over the years, one of ASAN's main goals has been to attack the organization they loathe so much, Autism Speaks. One of their complaints about AS has been the high compensation that some of the executives of the organization receive at the expense of autistic people who are denied the appropriate services or supports. I don't have AS president Liz Field's current salary handy nor the revenue that autism speaks made in the year 2012. It seems far fetched to me that her salary would amount to more than one-sixth of autism speaks total revenue which is the case of Ne'eman's ASAN salary for 2012.
Over the years I've criticized Ne'eman for giving advice on how autistics can find and keep employment when he had never actually worked. Matt Carey of the Left Brain Right Brain blog disputed what I said, claiming that Ne'eman's presidency of ASAN constituted legitimate work. At the time, I believed this statement to be fallacious because of what ABH wrote in the comments section of her post on the whose planet is it anyway blog.
I stand by my statement that Ne'eman has never worked a conventional job where you actually do something in the for profit sector or even a regular job where you have to go in and do some sort of work, even if it is for the government. Of course, I do admire his ingenuity in being able to start a charitable organization and raise his own salary by an amount double the increase in the organization's revenue.
One can only hope this continues to be the case. If Ne'eman's salary increases continue to outpace ASAN's revenue increases by the same amount, in the next several years ASAN's liabilities will exceed their assets and they will become defunct. Then perhaps we can have sane commentary on autism from people who really want do to something to help people such as myself and have constructive ideas on how to do so.
As recently as 2009, ASAN supporter "the autistic bitch from hell" (who has been rumored to be an alter-ego for ASAN board member Meg Evans) stated in the comments section of this blog post that the board of directors of ASAN, including Ne'eman himself, worked entirely on a pro bono basis and received no compensation whatsoever. This apparently changed just a couple of years later as of 2011. I've learned that ASAN recently posted their 2012 tax return online. They've also posted their 2011 return as well. I don't know if they've posted any tax returns of previous years anywhere on line, but if I find out they have I will write a new post or put an addendum on this one.
On reading the two returns, we see that while all of ASAN's board members, with the exception of Ne'eman, continued to be paid no compensation, Ne'eman drew a salary of $40,000 a year for serving as president of ASAN in 2011. In 2012, he raised his own pay to $65,000, a 62% annual salary increase which is as high an annual pay raise I suspect that most Americans would be glad to have, particularly in these recessionary times.
It could be argued that if Ne'eman's work had brought in a proportional increase of funding and donations then he would deserve this hefty pay increase. On perusal of ASAN's revenues for the years 2011 and 2012 we see there was an increase in ASAN's revenues of about $280,000 (rounded to the most even figures) to about $376,000. A 31% increase which is about half the percentage that Ne'eman raised his own salary.
Over the years, one of ASAN's main goals has been to attack the organization they loathe so much, Autism Speaks. One of their complaints about AS has been the high compensation that some of the executives of the organization receive at the expense of autistic people who are denied the appropriate services or supports. I don't have AS president Liz Field's current salary handy nor the revenue that autism speaks made in the year 2012. It seems far fetched to me that her salary would amount to more than one-sixth of autism speaks total revenue which is the case of Ne'eman's ASAN salary for 2012.
Over the years I've criticized Ne'eman for giving advice on how autistics can find and keep employment when he had never actually worked. Matt Carey of the Left Brain Right Brain blog disputed what I said, claiming that Ne'eman's presidency of ASAN constituted legitimate work. At the time, I believed this statement to be fallacious because of what ABH wrote in the comments section of her post on the whose planet is it anyway blog.
I stand by my statement that Ne'eman has never worked a conventional job where you actually do something in the for profit sector or even a regular job where you have to go in and do some sort of work, even if it is for the government. Of course, I do admire his ingenuity in being able to start a charitable organization and raise his own salary by an amount double the increase in the organization's revenue.
One can only hope this continues to be the case. If Ne'eman's salary increases continue to outpace ASAN's revenue increases by the same amount, in the next several years ASAN's liabilities will exceed their assets and they will become defunct. Then perhaps we can have sane commentary on autism from people who really want do to something to help people such as myself and have constructive ideas on how to do so.
Sunday, July 27, 2014
Why "The Gimmick" probably won't work for me
People who have followed my blog or my other adventures over the years know that one of my lifelong dreams was to write novels and have them be commercially successful.
I'd hoped to achieve that goal by using something I called the gimmick, which meant that I'd use my disability to get a novel published and help promote it.
Over the years, autism has become a hot topic in the media as anyone who is interested in it well knows. So, why not an autistic novelist who writes novels about autistic subject matter not be something that a lot of people in the general public would lap up and take an interest in? Why can't I be on Oprah (or equivalent as I guess Oprah is doing some other gig now), sixty minutes, the today show, various NPR shows such as Fresh Air and All things Considered, and, as a result, sell novels by the truckload and then have my second (and only self-published) novel, "The Mu Rhythm Bluff" made into a major motion picture? In my own particular case, (just talking about myself and not necessarily another aspiring autistic novelist) there are likely a variety of reasons why not, which I'll discuss in this blog post.
In previous posts, I've written about my trials and tribulations as a writer, but I'll repeat those here in case anyone hasn't read my previous posts or is interested in having their memory refreshed.
When I was about thirteen, during my last year of special ed, I decided I wanted to be a writer, particularly a novelist, though I hadn't read a great many novels at the time. I'm not sure what made me want to be a writer or when I exactly decided it. The following year, at age fourteen, I was finally mainstreamed in regular school. I decided to attempt to write my first novel about two boys with mental retardation who befriend each other and overcome the stigma society had placed on them. Writing a novel would seem something extraordinary for even a typical fourteen year old. However, at that time, I was a fourteen year-old boy who had had virtually no mainstream education (the exception being a regular private school I attended for half a semester before being expelled for behavioral issues, a couple of years before I permanently left special ed). I was too handicapped and disorganized at the time to write more than about 50 single spaced pages of this novel. My disability made it hard for me to do much of anything and I spent a lot of time twiddling (self-stimulatory behavior). I made other attempts to write novels during a tumultuous adolescence, including "Going Through the Doors" about a neurotic teenager who attempts to solve his problems through LSD use and gets involved in Vietnam demonstrations. "Going through the doors" is the most recent novel I've written, but more on that later.
I finally gave up on trying to write a novel as I struggled through college, though the dream never went away as I had a few ideas for stories, but my autism made it so difficult for me to do any executive planning or get tasks done.
Many years later, in my late 30s, I became friends with an individual with schizophrenia who was a prolific and gifted short story writer. I told him I'd wanted to write a novel but couldn't do it. He suggested I write short stories instead as they did not take as much effort or duration. It sounded like a good idea and I ended up writing sixteen of them. I tried to get them published without any success. I got a few encouraging rejection slips which made me think I had some talent as a writer. Glimmer Train stories, one of the more prestigious places you can get a story published wrote, 'quite a moving piece, enjoyed it' on the rejection slip after I submitted my story, "Mr. Twiddle" to them.
I still wanted to write a novel though and I began work on "The School of Hard Knocks", my first novel. I took a private writing class with a teacher who I later learned was a less than ethical individual. He told me I'd written what was the makings of a good novel and said he believed that one day it would be published.
I also met fellow participant Tamar Brott, a freelance journalist who wrote for Los Angeles Magazine and also did radio shows for NPR. Her work had been broadcast on Studio 360 and This American Life. I told her about the gimmick and what it meant and this intrigued her. She thought it would be a good idea for a radio show on This American Life. She pitched the story to the producers, including the renowned Ira Glass, who loved it. She interviewed me and told me the show would be a done deal. The Teacher of the Literature reading and writing course told me this would guarantee that my novel would be published. I was already beginning to count the chickens of stardom before the eggs had been hatched. This American Life decided not to run my show as they believed the way Tamar had written it was too negative. I would not get to be on national radio and the gimmick would fail to come to fruition. In spite of this, I submitted the novel to several agents. Susan Ramer took an interest in reading the first 100 pages and then rejected it, as did nine other agents.
By this time, I'd moved on and had taken a couple of novel writing courses at UCLA extension and had some freelance editors look at the school of hard knocks. They all agreed it needed major work and one editor even went to far to say it would be a waste of time to edit it. Tamar was subsequently able to get our show aired on Studio 360, another NPR show that takes on topics in the arts, though they don't have as big an audience as This American Life. This did not result in any publishers or agents approaching me and I realized it would have been a fool's errand to approach them with this particular novel as it stood.
Though devastated, I'd learned an important lesson. In order for the gimmick to work I needed to have the goods, i.e. a novel ready for submission for publication that would hold reader's interests. The School of Hard Knocks had failed on this front. This is the first reason the gimmick probably won't work for me. Though I've evolved a bit as a writer, the writing has to be good enough to rise above the rest of the slush pile and I'm not sure I'm capable of that. A few people though did tell me they loved "The Mu Rhythm Bluff" and I'm gratified for at least that.
Some years later, I wrote "The Mu Rhythm Bluff" my second novel. Hopefully I'd learned some lessons about writing since "The School of Hard Knocks" I submitted it to nine agents and was rejected. Only one or two even bothered to answer me, unlike several years previously when I briefly shopped the school of hard knocks around and every action wrote me back saying they were stepping aside. I'd learned that because of the internet and digital publishing there had been great changes in the industry. As difficult as it had always been for a new writer to break in, it was now all but impossible. The only upside was that with the advent of Amazon's create space and kindle direct publishing plantforms, self-publishing a novel and selling it had become a much more viable option. I decided to go with this one.
I wrote to reviewers, studio 360 whose show I'd been on before, Oliver Sacks and some others and they all rebuffed me or did not answer me. There, were of course, others in the autism field who might have been able to help me out, but I didn't care for Temple Grandin, Simon Baron-Cohen, the people who believe that vaccines cause autism and least of all for the collective membership of the neurodiversity movement.
Another individual I'd met from the autism world who'd taken an interest in me was Steve Edelson who had taken over running the Autism Research Institute. I disagreed with him on many points, but still maintained a friendly relationship with him.
Though many studies had refuted secretin as an effective autism treatment, Edelson still pushed this (not to mention many other questionable autism treatments) as a legitimate treatment. I wrote some unfavorable blog posts about secretin and Edelson's positions on it. I emailed him telling him about this and he was rather appaled and that ended our friendship. He's not someone who I really could ask to help me publicize my work.
I contacted autism speaks by email and told them about it and never heard back from them. I've been a harsh critic of autism speaks in the past so that may have had something to do with it.
I tried to contact the autism society in Maryland but just got an answer machine and apparently getting a human to return your call from them is difficult. I'd been very critical of them in the past though for having endorsed Ari Ne'eman's appointment to the NCD as well as having Alex Plank as their keynote speaker at one of their conferences one year and maybe that had something to do with it.
I did contact the L.A. chapter and they featured me in a newsletter in the beginning of July and I sold 6 books since July 1 probably because of that article, so it probably helped me somewhat.
So, in sum, I either have had poor relations or made outright enemies with the group that has the most potential to help me publicize my novels. This and the fact I may be incapable of writing a publishable novel are two of the main reasons why the gimmick probably won't work for me.
Another reason is that if they wanted to use someone in a gimmick, they might want someone younger and sexier than myself. Now that I'm nearly fifty-nine years old, I really don't fit that bill.
I've now written "Going Through the Doors", one of the novels I'd attempted to write in the 1970's during my adolescence. Though I'd failed to be able to write it at the time it would have been contemporary fiction, I'm sort of glad I wrote it later in my life. It seems far more interesting to have written it as a historical novel as a man in my late fifties than it would have been to have written it as a present day novel in my teens. At this point in time, I'm submitting GTtD to the internet writer's workshop where some beta readers are pointing out ways I can edit it and improve it so that it is either ready for submission or self publication. I'm still not sure what I'm going to do with it. I'm not sure if there is any point in submitting it to a publisher, agent or self publishing it on amazon's KDP and create space platforms. One of the reasons why using the gimmick for this probably wouldn't work is because it has no relevance to autism and for a novel by an autistic novelist to get attention it would probably have to have an autism-related theme the way "The School of Hard Knocks" and "The Mu Rhythm Bluff" did, aside from the fact I've managed to piss off the majority of the autism community, my novels may not be good or publishable and I'm an unsexy 58-year-old.
I'm currently working no a novel length version of my short story, "Dog Bites Man" but this has the same problem as "Going Through the Doors" in not being autism related.
Other options I have that I haven't explored yet are to have business cards made up of "The mu Rhythm Bluff" and maybe going to some autism conferences and handing them out. I'm not sure when I'll do this though, as I still have problems with organization and executive function in spite of the fact I was finally able to write a few novels well into middle age.
I have no regrets though. As superficial a person as I am, I'm not going to be an obsequious yes man just to get some books published and/or sold.
Hopefully I'll be able to continue writing for the remaining years I have left on this planet. I'll still write for the joy of writing, but it does not look like the gimmick will work for me.
I'd hoped to achieve that goal by using something I called the gimmick, which meant that I'd use my disability to get a novel published and help promote it.
Over the years, autism has become a hot topic in the media as anyone who is interested in it well knows. So, why not an autistic novelist who writes novels about autistic subject matter not be something that a lot of people in the general public would lap up and take an interest in? Why can't I be on Oprah (or equivalent as I guess Oprah is doing some other gig now), sixty minutes, the today show, various NPR shows such as Fresh Air and All things Considered, and, as a result, sell novels by the truckload and then have my second (and only self-published) novel, "The Mu Rhythm Bluff" made into a major motion picture? In my own particular case, (just talking about myself and not necessarily another aspiring autistic novelist) there are likely a variety of reasons why not, which I'll discuss in this blog post.
In previous posts, I've written about my trials and tribulations as a writer, but I'll repeat those here in case anyone hasn't read my previous posts or is interested in having their memory refreshed.
When I was about thirteen, during my last year of special ed, I decided I wanted to be a writer, particularly a novelist, though I hadn't read a great many novels at the time. I'm not sure what made me want to be a writer or when I exactly decided it. The following year, at age fourteen, I was finally mainstreamed in regular school. I decided to attempt to write my first novel about two boys with mental retardation who befriend each other and overcome the stigma society had placed on them. Writing a novel would seem something extraordinary for even a typical fourteen year old. However, at that time, I was a fourteen year-old boy who had had virtually no mainstream education (the exception being a regular private school I attended for half a semester before being expelled for behavioral issues, a couple of years before I permanently left special ed). I was too handicapped and disorganized at the time to write more than about 50 single spaced pages of this novel. My disability made it hard for me to do much of anything and I spent a lot of time twiddling (self-stimulatory behavior). I made other attempts to write novels during a tumultuous adolescence, including "Going Through the Doors" about a neurotic teenager who attempts to solve his problems through LSD use and gets involved in Vietnam demonstrations. "Going through the doors" is the most recent novel I've written, but more on that later.
I finally gave up on trying to write a novel as I struggled through college, though the dream never went away as I had a few ideas for stories, but my autism made it so difficult for me to do any executive planning or get tasks done.
Many years later, in my late 30s, I became friends with an individual with schizophrenia who was a prolific and gifted short story writer. I told him I'd wanted to write a novel but couldn't do it. He suggested I write short stories instead as they did not take as much effort or duration. It sounded like a good idea and I ended up writing sixteen of them. I tried to get them published without any success. I got a few encouraging rejection slips which made me think I had some talent as a writer. Glimmer Train stories, one of the more prestigious places you can get a story published wrote, 'quite a moving piece, enjoyed it' on the rejection slip after I submitted my story, "Mr. Twiddle" to them.
I still wanted to write a novel though and I began work on "The School of Hard Knocks", my first novel. I took a private writing class with a teacher who I later learned was a less than ethical individual. He told me I'd written what was the makings of a good novel and said he believed that one day it would be published.
I also met fellow participant Tamar Brott, a freelance journalist who wrote for Los Angeles Magazine and also did radio shows for NPR. Her work had been broadcast on Studio 360 and This American Life. I told her about the gimmick and what it meant and this intrigued her. She thought it would be a good idea for a radio show on This American Life. She pitched the story to the producers, including the renowned Ira Glass, who loved it. She interviewed me and told me the show would be a done deal. The Teacher of the Literature reading and writing course told me this would guarantee that my novel would be published. I was already beginning to count the chickens of stardom before the eggs had been hatched. This American Life decided not to run my show as they believed the way Tamar had written it was too negative. I would not get to be on national radio and the gimmick would fail to come to fruition. In spite of this, I submitted the novel to several agents. Susan Ramer took an interest in reading the first 100 pages and then rejected it, as did nine other agents.
By this time, I'd moved on and had taken a couple of novel writing courses at UCLA extension and had some freelance editors look at the school of hard knocks. They all agreed it needed major work and one editor even went to far to say it would be a waste of time to edit it. Tamar was subsequently able to get our show aired on Studio 360, another NPR show that takes on topics in the arts, though they don't have as big an audience as This American Life. This did not result in any publishers or agents approaching me and I realized it would have been a fool's errand to approach them with this particular novel as it stood.
Though devastated, I'd learned an important lesson. In order for the gimmick to work I needed to have the goods, i.e. a novel ready for submission for publication that would hold reader's interests. The School of Hard Knocks had failed on this front. This is the first reason the gimmick probably won't work for me. Though I've evolved a bit as a writer, the writing has to be good enough to rise above the rest of the slush pile and I'm not sure I'm capable of that. A few people though did tell me they loved "The Mu Rhythm Bluff" and I'm gratified for at least that.
Some years later, I wrote "The Mu Rhythm Bluff" my second novel. Hopefully I'd learned some lessons about writing since "The School of Hard Knocks" I submitted it to nine agents and was rejected. Only one or two even bothered to answer me, unlike several years previously when I briefly shopped the school of hard knocks around and every action wrote me back saying they were stepping aside. I'd learned that because of the internet and digital publishing there had been great changes in the industry. As difficult as it had always been for a new writer to break in, it was now all but impossible. The only upside was that with the advent of Amazon's create space and kindle direct publishing plantforms, self-publishing a novel and selling it had become a much more viable option. I decided to go with this one.
I wrote to reviewers, studio 360 whose show I'd been on before, Oliver Sacks and some others and they all rebuffed me or did not answer me. There, were of course, others in the autism field who might have been able to help me out, but I didn't care for Temple Grandin, Simon Baron-Cohen, the people who believe that vaccines cause autism and least of all for the collective membership of the neurodiversity movement.
Another individual I'd met from the autism world who'd taken an interest in me was Steve Edelson who had taken over running the Autism Research Institute. I disagreed with him on many points, but still maintained a friendly relationship with him.
Though many studies had refuted secretin as an effective autism treatment, Edelson still pushed this (not to mention many other questionable autism treatments) as a legitimate treatment. I wrote some unfavorable blog posts about secretin and Edelson's positions on it. I emailed him telling him about this and he was rather appaled and that ended our friendship. He's not someone who I really could ask to help me publicize my work.
I contacted autism speaks by email and told them about it and never heard back from them. I've been a harsh critic of autism speaks in the past so that may have had something to do with it.
I tried to contact the autism society in Maryland but just got an answer machine and apparently getting a human to return your call from them is difficult. I'd been very critical of them in the past though for having endorsed Ari Ne'eman's appointment to the NCD as well as having Alex Plank as their keynote speaker at one of their conferences one year and maybe that had something to do with it.
I did contact the L.A. chapter and they featured me in a newsletter in the beginning of July and I sold 6 books since July 1 probably because of that article, so it probably helped me somewhat.
So, in sum, I either have had poor relations or made outright enemies with the group that has the most potential to help me publicize my novels. This and the fact I may be incapable of writing a publishable novel are two of the main reasons why the gimmick probably won't work for me.
Another reason is that if they wanted to use someone in a gimmick, they might want someone younger and sexier than myself. Now that I'm nearly fifty-nine years old, I really don't fit that bill.
I've now written "Going Through the Doors", one of the novels I'd attempted to write in the 1970's during my adolescence. Though I'd failed to be able to write it at the time it would have been contemporary fiction, I'm sort of glad I wrote it later in my life. It seems far more interesting to have written it as a historical novel as a man in my late fifties than it would have been to have written it as a present day novel in my teens. At this point in time, I'm submitting GTtD to the internet writer's workshop where some beta readers are pointing out ways I can edit it and improve it so that it is either ready for submission or self publication. I'm still not sure what I'm going to do with it. I'm not sure if there is any point in submitting it to a publisher, agent or self publishing it on amazon's KDP and create space platforms. One of the reasons why using the gimmick for this probably wouldn't work is because it has no relevance to autism and for a novel by an autistic novelist to get attention it would probably have to have an autism-related theme the way "The School of Hard Knocks" and "The Mu Rhythm Bluff" did, aside from the fact I've managed to piss off the majority of the autism community, my novels may not be good or publishable and I'm an unsexy 58-year-old.
I'm currently working no a novel length version of my short story, "Dog Bites Man" but this has the same problem as "Going Through the Doors" in not being autism related.
Other options I have that I haven't explored yet are to have business cards made up of "The mu Rhythm Bluff" and maybe going to some autism conferences and handing them out. I'm not sure when I'll do this though, as I still have problems with organization and executive function in spite of the fact I was finally able to write a few novels well into middle age.
I have no regrets though. As superficial a person as I am, I'm not going to be an obsequious yes man just to get some books published and/or sold.
Hopefully I'll be able to continue writing for the remaining years I have left on this planet. I'll still write for the joy of writing, but it does not look like the gimmick will work for me.
Friday, July 25, 2014
John Tucker interviews me on his author blog
I've been interviewed about "The Mu Rhythm Bluff" on John Tucker's blog. John is a fellow novelist whom I encountered in the online internet writer's workshop where we've spent time critiquing each other's work. He was a great help in my being able to make "The Mu Rhythm Bluff" into as good a novel as possible based on my first rough drafts. Well without further ado, you can read the entire interview here
Tuesday, July 22, 2014
Jenny McCarthy's son bullied
I've just read an article that saddened me a good deal about Jenny McCarthy's son being bullied due to his autism. What was even sadder is that he apparently lacks the social understanding to know that he's being bullied.
Ms. McCarthy has generated a great deal of controversy in the autism community due to her stance that vaccines cause autism, and, for that reason, a lot of people were outraged when she got the job as one of the anchors on the television show, The view.
On a side note, I met the former playboy centerfold at an autism conference about six years ago that my friend Steve Shore was presenting at. She had recently appeared on the Larry King show stating that she had never met an autistic adult. Steve, another friend of Steve's and mine, and myself introduced ourselves to her. I pointed out that now she had met some autistic adults. Her response was, "you guys are awesome."
I think about all of the bullying I had to endure growing up as a child due to my autism, so this article hit home with me.
What is sadder was McCarthy's view co-host Whoppi Goldberg's inane suggestion that she discuss the problem the the bullies' parents. Somehow I don't think she's going to be able to meet every parent of every kid her son might come across. I wish I had a suggestion for Jenny but I don't.
Usually, I was aware that other kids were bullying me, except occasionally when some girls in junior high (called middle school nowadays) pretended to flirt with me and for a while I did not understand they were making fun of me.
Bullying is not a real problem for me nowadays, though the pain does not go away very easily, even after decades. I still get bullied occasionally by some of the less than savory members of the neurodiversity movement. I just try to shrug it off, though occasionally I did rise to their bait. I regret it now and hope I won't do it again. But that's okay. I realize it's the price I have to pay for daring to publicly say I want a cure for autism to be available and that I believe autism is a horrible disability and actually having the flippancy and chutzpah to write it on my blog.
Though I realize Ms. McCarthy has been a controversial figure in the past and is unpopular with some people, we should still have sympathy for her and what her son are going through and it is truly shameful that this has to happen. Regardless of how anyone feels about McCarthy personally, they can still feel sadness about what is happening to her son and what sort of life he may lead as he grows older and will likely have to endure more of this.
Other than making bullying a psychiatric diagnosis in the DSM, and sending bullies to a segregated special ed school just for bullies, which I've suggested doing in a previous article I wrote , I'm not sure what can be done. But reading this did make me sad and think of the bullying I had to endure in my youth.
Ms. McCarthy has generated a great deal of controversy in the autism community due to her stance that vaccines cause autism, and, for that reason, a lot of people were outraged when she got the job as one of the anchors on the television show, The view.
On a side note, I met the former playboy centerfold at an autism conference about six years ago that my friend Steve Shore was presenting at. She had recently appeared on the Larry King show stating that she had never met an autistic adult. Steve, another friend of Steve's and mine, and myself introduced ourselves to her. I pointed out that now she had met some autistic adults. Her response was, "you guys are awesome."
I think about all of the bullying I had to endure growing up as a child due to my autism, so this article hit home with me.
What is sadder was McCarthy's view co-host Whoppi Goldberg's inane suggestion that she discuss the problem the the bullies' parents. Somehow I don't think she's going to be able to meet every parent of every kid her son might come across. I wish I had a suggestion for Jenny but I don't.
Usually, I was aware that other kids were bullying me, except occasionally when some girls in junior high (called middle school nowadays) pretended to flirt with me and for a while I did not understand they were making fun of me.
Bullying is not a real problem for me nowadays, though the pain does not go away very easily, even after decades. I still get bullied occasionally by some of the less than savory members of the neurodiversity movement. I just try to shrug it off, though occasionally I did rise to their bait. I regret it now and hope I won't do it again. But that's okay. I realize it's the price I have to pay for daring to publicly say I want a cure for autism to be available and that I believe autism is a horrible disability and actually having the flippancy and chutzpah to write it on my blog.
Though I realize Ms. McCarthy has been a controversial figure in the past and is unpopular with some people, we should still have sympathy for her and what her son are going through and it is truly shameful that this has to happen. Regardless of how anyone feels about McCarthy personally, they can still feel sadness about what is happening to her son and what sort of life he may lead as he grows older and will likely have to endure more of this.
Other than making bullying a psychiatric diagnosis in the DSM, and sending bullies to a segregated special ed school just for bullies, which I've suggested doing in a previous article I wrote , I'm not sure what can be done. But reading this did make me sad and think of the bullying I had to endure in my youth.
Thursday, July 17, 2014
My meeting with Marco Iacoboni
I've previously written about my interest in mirror neurons and their possible involvement in autism. I've also written about Marco Iacoboni, the UCLA neuroscientist who has done a lot of the pioneering research on mirror neurons in humans. These are neurons that fire, both in response to performing an action such as a hand movement, but also fire when observing a hand action. These neurons are also associated with mu rhythms, brain waves found over the prefrontal motor strip. These rhythms are suppressed in both typical and autistic people when they observe a motion of their own hand. They are suppressed in typical people when observing the movements of others. In autistic people mu rhythms still occur in the brain when they observe movements of other people. I won't go into all of the minutia here. If anyone is interested, I've written a more detailed post about this here Dr. Iacoboni has also done work in TMS (transcranial magnetic stimulation) where a magnet is put up to the brain and stimulates it by creating a voltage so that a group of neurons will have action potentials so that various areas of the brain can be enhanced or suppressed. Though I don't know a whole lot about TMS, it's an area of research that interests me. It was my interest in these subjects that partially inspired my novel, "The Mu Rhythm Bluff".
After I read Dr. Iacoboni's book, Mirroring People, I sent him an email asking him a few questions I had about the book and the field of mirror neuron research. He was very gracious and answered my questions. At various times I've exchanged email with him. Later, we became friends on facebook.
Due to loneliness from my autism, from time to time I take advantage of the chat feature on FB and message people. Not everyone is into chatting in real time when they are on FB, but Dr. Iacoboni would sometimes chat with me.
There's been a growing interest in using TMS to research the autistic brain or even as a possible treatment for autism. Manuel Casanova has been one of the people to do research in this area. Also Harvard researchers Alvaro Pascual-Leone and Lindsay Oberman have worked with TMS. Peter Enticott in Australia is another scientist in this field.
Iacoboni and his colleagues are now possibly interested in doing research in this area also. Therefore, he thought it might be good if I could meet him and some of the people in his lab so they could get an exposure to a high-functioning person with autism. So, yesterday, I went to the lab and met the people. They asked me some questions and I gave "The Mu Rhythm Bluff" a plug.
Next, Dr. I gave me a brief tour of the facility. There has been some research (though I admit I'm not familiar with most of the details) suggesting that under connectivity in the brain may be one of the causes of autism. That is neurons with very long axons that would connect distant parts of the brain with each other may be underdeveloped in autism. Dr. I seemed to believe that with TMS treatments they could improve the connectivity distant areas of the brain have with each other in autistic people.
One of the problems with TMS may be the magnetic pulses don't reach more than two inches into the brain. Some of the deeper structures of the limbic system, such as the amygdala and the hippocampus, which may be involved in autism lie deeper than this. However, there is a theory that there is a so-called "cascading effect" where various areas of the brain are interconnected to each other. This is why Manuel Casanova chose to stimulate dorsolateral prefrontal cortex in his subjects. Because it was an area of the brain interconnecting many other parts, aside from the fact that his postmortem autopsies found minicolumnar abnormalities in this area.
Of course, no one knows exactly what is going wrong with the autism brain, so which areas to stimulate or inhibit may not be viable option for research.
I'm not sure if TMS will ever be an effective treatment for autism, but I would very possibly be interested in being a research subject in this endeavor. I don't know if I will be or not, but I'll post future developments in the blog.
I enjoyed meeting Dr. I and his staff and hope to see him again some day.
After I read Dr. Iacoboni's book, Mirroring People, I sent him an email asking him a few questions I had about the book and the field of mirror neuron research. He was very gracious and answered my questions. At various times I've exchanged email with him. Later, we became friends on facebook.
Due to loneliness from my autism, from time to time I take advantage of the chat feature on FB and message people. Not everyone is into chatting in real time when they are on FB, but Dr. Iacoboni would sometimes chat with me.
There's been a growing interest in using TMS to research the autistic brain or even as a possible treatment for autism. Manuel Casanova has been one of the people to do research in this area. Also Harvard researchers Alvaro Pascual-Leone and Lindsay Oberman have worked with TMS. Peter Enticott in Australia is another scientist in this field.
Iacoboni and his colleagues are now possibly interested in doing research in this area also. Therefore, he thought it might be good if I could meet him and some of the people in his lab so they could get an exposure to a high-functioning person with autism. So, yesterday, I went to the lab and met the people. They asked me some questions and I gave "The Mu Rhythm Bluff" a plug.
Next, Dr. I gave me a brief tour of the facility. There has been some research (though I admit I'm not familiar with most of the details) suggesting that under connectivity in the brain may be one of the causes of autism. That is neurons with very long axons that would connect distant parts of the brain with each other may be underdeveloped in autism. Dr. I seemed to believe that with TMS treatments they could improve the connectivity distant areas of the brain have with each other in autistic people.
One of the problems with TMS may be the magnetic pulses don't reach more than two inches into the brain. Some of the deeper structures of the limbic system, such as the amygdala and the hippocampus, which may be involved in autism lie deeper than this. However, there is a theory that there is a so-called "cascading effect" where various areas of the brain are interconnected to each other. This is why Manuel Casanova chose to stimulate dorsolateral prefrontal cortex in his subjects. Because it was an area of the brain interconnecting many other parts, aside from the fact that his postmortem autopsies found minicolumnar abnormalities in this area.
Of course, no one knows exactly what is going wrong with the autism brain, so which areas to stimulate or inhibit may not be viable option for research.
I'm not sure if TMS will ever be an effective treatment for autism, but I would very possibly be interested in being a research subject in this endeavor. I don't know if I will be or not, but I'll post future developments in the blog.
I enjoyed meeting Dr. I and his staff and hope to see him again some day.
Thursday, June 12, 2014
Autistic superiority on embedded figures test and resultant employability: fact or fiction?
Autistics have superior skills that can help them find jobs! Headlines such as these have become frequent fodder in the popular media. Persons on the autism spectrum are said to have superior "attention to detail". This makes them superior candidates for jobs such as TSA screeners and software testers. Companies such as SAP, Specialisterne and Aspiritech are training high functioning autistics to be software testers and debuggers. A statistic cited in a lot of these articles is that 85% of autistics are unemployed (I have no notion of where this statistic comes from)If we can only tap all of the superior skills autistics have where they outperform typical people the problem will be solved. These people will find their niche and the lack of social skills or other deficits that people on the spectrum have will be immaterial to their occupational success.
Where does this nebulous term "attention to details" come from? At least one of the sources is the commonly held belief that autistic people outperform non-autistic people on the Embedded Figures Test-a test where a person has to find a hidden triangle in a larger image or a Where's Waldo type of picture. Simon Baron-Cohen has said that this shows that autistic people have "attention to details". Laurent Mottron and Michelle Dawson have cited various studies showing that autistics outperform non-autistics on this test. They apparently believe that this superiority will enable autistics to be better educated and help them get jobs and even get along better with their parents. This was the rationale that Autism Speaks gave when awarding them a research grant totaling nearly half a million dollars.
Probably the first study of autistics' performance on the Embedded Figures test was done by Uta Frith and Neil Shah. They found that the autistics outperformed the non-autistics in both speed and accuracy. The reason they gave for the superior performance was something called weak central coherence, meaning that autistics have a poor ability to see the large general picture of things and therefore have difficulty understanding context. But the upside is that they might think about things in the smallest parts and therefore might be more attentive to minute details than a typical person. This could give them a superior ability in math and engineering for instance, even if they had resultant deficits in other areas. In other words, though the autistic may miss the forest for the trees, they are superior at seeing the trees in the forest.
Have Frith and Shah's findings been uniformly replicated by independent investigators or is this superior attention to detail (as measured by the Embedded Figures Test) an urban legend? According to a paper by British cognitive scientist Sarah White, the latter may be true rather than the former.
She cites the sixteen studies published subsequent to Shah and Frith's work that had group designs in which autistic person's performances were compared to controls on the Embedded figures test. Only two of these studies replicated the accuracy difference between autistics and typical controls. Of the remaining fourteen studies, half (seven) showed that autistics were able to find the embedded figures more quickly than controls but were either no more accurate or accuracy rates were not cited in the papers. One of the papers showed differences in accuracy only between low functioning autistics and matched controls but no differences in the higher functioning autistics. One paper showed the autistics were less accurate than matched controls on the test. I'll discuss later what this means in terms of suitability for jobs such as software tester or airport screener. There were a variety of possible reasons for the discrepancy in studies such as differences in the way the test was administered, different groups of controls vs. autistics.
In White's study, she used a very large sample of high-functioning (as measured by IQs) autistics vs. intellectually matched controls and found no differences in accuracies on the EFT between the two groups. The autistic group performed the task slightly more quickly, but the difference was not statistically significant.
One salient difference that stands out is that the group differences in accuracy were generally detected with more severely autistic persons rather than persons with milder forms of the condition. This is particularly relevant to Frith and Shah's work in that it was published in the early 1980s when the definition of autism was different from that of today and it is unlikely their findings would have applicability to people more mildly autistic that would not have been diagnosed as such at that time.
Most of the persons who would be candidates for the above-cited jobs based on an "exceptional attention to detail" would be considered at the milder end of the spectrum. Assuming Frith and Shah's weak central coherence theory of autism has any validity, it is unlikely that it would be applicable to these people whose central coherence would most likely be closer to that of a typical person's. Therefore, it is less likely, according to the actual science, they would have these alleged assets that would help them in these professions.
According to some, the seven out of seventeen studies that showed superior speed on the test would be demonstrative of an autistic superiority. I don't agree, particularly if you are applying the research to enable autistics to perform jobs or stating this research shows they are suited for these occupations. I know from personal experience accuracy does matter. In the days when I was still a medical transcriptionist, my production levels were on par with that of the non-autistic transcriptionists. However, I made more mistakes and this cost me a variety of jobs. This was also true in the other professions I worked in before I retired. In the business world, you could be the fastest employee in the world, but if you're not more accurate, you're kaput.
Though I've read White's article, I have not read the other studies and I will admit to that. If there is something White gets wrong or something else I am not understanding, I guess people can let me know in the comments section. Also, there may be other tests given to autistics that allegedly measure attention to detail that I don't know about. I believe the embedded figures test is the main one though.
I want to sum up to say to anyone reading this article, don't get me wrong. I think it's great that people would want to train persons on the spectrum for various jobs and I hope they succeed in the jobs, regardless of whether they have good attention to detail or not. Whatever will enable a person with autism to succeed, I'm all for it and if they can be a success in a job, all the power to them. I hope that SAP, specialistirne and others can help autistics. Though, I've been very critical of John Robison in the past, I do applaud his efforts to train people on the spectrum in the automotive profession. However, I don't think it's helpful to promote what are likely urban legends based on a lack of demonstrated science or science now made obsolete by a different definition of autism where more high functioning autistic people are identified.
Where does this nebulous term "attention to details" come from? At least one of the sources is the commonly held belief that autistic people outperform non-autistic people on the Embedded Figures Test-a test where a person has to find a hidden triangle in a larger image or a Where's Waldo type of picture. Simon Baron-Cohen has said that this shows that autistic people have "attention to details". Laurent Mottron and Michelle Dawson have cited various studies showing that autistics outperform non-autistics on this test. They apparently believe that this superiority will enable autistics to be better educated and help them get jobs and even get along better with their parents. This was the rationale that Autism Speaks gave when awarding them a research grant totaling nearly half a million dollars.
Probably the first study of autistics' performance on the Embedded Figures test was done by Uta Frith and Neil Shah. They found that the autistics outperformed the non-autistics in both speed and accuracy. The reason they gave for the superior performance was something called weak central coherence, meaning that autistics have a poor ability to see the large general picture of things and therefore have difficulty understanding context. But the upside is that they might think about things in the smallest parts and therefore might be more attentive to minute details than a typical person. This could give them a superior ability in math and engineering for instance, even if they had resultant deficits in other areas. In other words, though the autistic may miss the forest for the trees, they are superior at seeing the trees in the forest.
Have Frith and Shah's findings been uniformly replicated by independent investigators or is this superior attention to detail (as measured by the Embedded Figures Test) an urban legend? According to a paper by British cognitive scientist Sarah White, the latter may be true rather than the former.
She cites the sixteen studies published subsequent to Shah and Frith's work that had group designs in which autistic person's performances were compared to controls on the Embedded figures test. Only two of these studies replicated the accuracy difference between autistics and typical controls. Of the remaining fourteen studies, half (seven) showed that autistics were able to find the embedded figures more quickly than controls but were either no more accurate or accuracy rates were not cited in the papers. One of the papers showed differences in accuracy only between low functioning autistics and matched controls but no differences in the higher functioning autistics. One paper showed the autistics were less accurate than matched controls on the test. I'll discuss later what this means in terms of suitability for jobs such as software tester or airport screener. There were a variety of possible reasons for the discrepancy in studies such as differences in the way the test was administered, different groups of controls vs. autistics.
In White's study, she used a very large sample of high-functioning (as measured by IQs) autistics vs. intellectually matched controls and found no differences in accuracies on the EFT between the two groups. The autistic group performed the task slightly more quickly, but the difference was not statistically significant.
One salient difference that stands out is that the group differences in accuracy were generally detected with more severely autistic persons rather than persons with milder forms of the condition. This is particularly relevant to Frith and Shah's work in that it was published in the early 1980s when the definition of autism was different from that of today and it is unlikely their findings would have applicability to people more mildly autistic that would not have been diagnosed as such at that time.
Most of the persons who would be candidates for the above-cited jobs based on an "exceptional attention to detail" would be considered at the milder end of the spectrum. Assuming Frith and Shah's weak central coherence theory of autism has any validity, it is unlikely that it would be applicable to these people whose central coherence would most likely be closer to that of a typical person's. Therefore, it is less likely, according to the actual science, they would have these alleged assets that would help them in these professions.
According to some, the seven out of seventeen studies that showed superior speed on the test would be demonstrative of an autistic superiority. I don't agree, particularly if you are applying the research to enable autistics to perform jobs or stating this research shows they are suited for these occupations. I know from personal experience accuracy does matter. In the days when I was still a medical transcriptionist, my production levels were on par with that of the non-autistic transcriptionists. However, I made more mistakes and this cost me a variety of jobs. This was also true in the other professions I worked in before I retired. In the business world, you could be the fastest employee in the world, but if you're not more accurate, you're kaput.
Though I've read White's article, I have not read the other studies and I will admit to that. If there is something White gets wrong or something else I am not understanding, I guess people can let me know in the comments section. Also, there may be other tests given to autistics that allegedly measure attention to detail that I don't know about. I believe the embedded figures test is the main one though.
I want to sum up to say to anyone reading this article, don't get me wrong. I think it's great that people would want to train persons on the spectrum for various jobs and I hope they succeed in the jobs, regardless of whether they have good attention to detail or not. Whatever will enable a person with autism to succeed, I'm all for it and if they can be a success in a job, all the power to them. I hope that SAP, specialistirne and others can help autistics. Though, I've been very critical of John Robison in the past, I do applaud his efforts to train people on the spectrum in the automotive profession. However, I don't think it's helpful to promote what are likely urban legends based on a lack of demonstrated science or science now made obsolete by a different definition of autism where more high functioning autistic people are identified.
Tuesday, June 10, 2014
Write congress, urge a no vote on HR 4631
The neurodiversity movement
has again succeded in one of their inane crusades, persuading congress to change the name of the Combating Autism Act to the Autism Collaboration, Accountability Research, Education and Support (CARES) Act. Autism Speaks who funded Laurent Mottron and had John Robison on a science advisory board has also gotten into the act
.
When this law was originally passed, it was the now defunct Cure Autism Now, that lobbied for it. The original intent was to do research to find a cure for autism and end this nightmare that affects so many of us.
Ari Ne'eman, John Robison and their cronies found the language in the act offensive and so congress is changing the name of this law while reauthorizing it.
The ND movement has already succeeded in packing the interagency autism coordinating committee with members of their warped ideology. To date, not a single pro-cure, anti-neurodiversity autistic has been appointed to the public membership of the Interagency Autism Coordinating Committee.
Even when this was called the combating autism act, it was a very bad law. Not just because of all the members of ND that were appointed to public membership, but the fact that it spent millions of dollars on the CDC's autism surveillance program which gives the phony 1 in 68 number which was acquired by looking at school and health records of kids and counting them as autistic if anything at all suggested they had this condition, regardless of whether or not there was an actual diagnosis reported. This money does absolutely nothing to help those on the spectrum. Their other work does nothing to help autistic people.
Now, the proposed law states that autism should not even be combated anymore. Is a rose by any other name just as foul smelling as before? I really don't know.
We need to get rid of this law and allow the private sector to take over. I wish the government would just return the 260 million bucks this law authorizes to the taxpayers who have a stake in autism. Hopefully an awesome private sector foundation would support sane scientists who would find treatments or even a cure for this horrible disability from which I suffer every day. I realize this is an opium-induced dream and there is no way I can make it happen.
One thing we can do, however, is write our congress person, urging them to vote no on this legislation which has the new name that implies we should not try to find a cure for autism.
I've written my congress person. I hope any American who reads this and agrees with me will do the same.
Ari Ne'eman, John Robison and their cronies found the language in the act offensive and so congress is changing the name of this law while reauthorizing it.
The ND movement has already succeeded in packing the interagency autism coordinating committee with members of their warped ideology. To date, not a single pro-cure, anti-neurodiversity autistic has been appointed to the public membership of the Interagency Autism Coordinating Committee.
Even when this was called the combating autism act, it was a very bad law. Not just because of all the members of ND that were appointed to public membership, but the fact that it spent millions of dollars on the CDC's autism surveillance program which gives the phony 1 in 68 number which was acquired by looking at school and health records of kids and counting them as autistic if anything at all suggested they had this condition, regardless of whether or not there was an actual diagnosis reported. This money does absolutely nothing to help those on the spectrum. Their other work does nothing to help autistic people.
Now, the proposed law states that autism should not even be combated anymore. Is a rose by any other name just as foul smelling as before? I really don't know.
We need to get rid of this law and allow the private sector to take over. I wish the government would just return the 260 million bucks this law authorizes to the taxpayers who have a stake in autism. Hopefully an awesome private sector foundation would support sane scientists who would find treatments or even a cure for this horrible disability from which I suffer every day. I realize this is an opium-induced dream and there is no way I can make it happen.
One thing we can do, however, is write our congress person, urging them to vote no on this legislation which has the new name that implies we should not try to find a cure for autism.
I've written my congress person. I hope any American who reads this and agrees with me will do the same.
Tuesday, May 27, 2014
More Words of Wisdom on Autistic Unemployment
I was interested in reading yet another article giving easy and simplistic solutions on the problems of unemployment among autistic people entitled How the Hiring Process Marginalizes Candidates on The Autism Spectrum. The article starts out claiming that half a million persons with autism are educated and hirable. I'm not sure where this half a million figure comes from and the article does not explain it.
The article starts out misrepresenting the 1 in 68 number, as do so many people who write about autism. It claims that many of these autistic go on to higher education and are employable, but are unemployed because societal constraints on the hiring process.
The article quotes Marcia Scheiner, president and founder of the organization ASTEP (Asperger Syndrome Training and Employment Program) who discusses how important doing well on an interview is to the hiring process and how persons on the spectrum are at a disadvantage because they don't interview well. I've written about ASTEPpreviously if the interested reader is curious about this organization.
I question how many persons on the spectrum (regardless of whether they have asperger's or autism) really have qualifications right out of college which would enable them to do a variety of jobs. Jobs requiring no paid experience are few and far between, particularly in a bad economy.
If a person has the skill set, I believe they can be hired for a lot of different jobs, despite lack of interviewing skills. I worked sporadically as a medical transcriptionist between 1986 and 2007. To get my foot in the door I had to do piecework as an independent contractor at less than minimum wage. Once I garnered some experience, I was able to get other transcription gigs. No one did extensive interviewing of me for these positions. They were easily able to administer tests to gauge my ability to do the job by giving me a report to transcribe. If you can pass tests like these, you have the job, in spite of a poor ability to interview.
When I was trying to get into the computer field, lack of education and experience led me to fail a test in one company I applied for, that did not get me the job.
I know of one individual on the spectrum who has a math degree and has tried to become an insurance actuary but has failed the preliminary exam which can get you hired. What difference does it make whether he can interview or not?
I know of another individual on the spectrum who stammers when he speaks and probably would not be counted as someone who could do well at job interviews, yet he has had a number of jobs, albeit menial ones. Apparently lack of interviewing skills did not stop him.
One of the main problems I have with this piece, it only addresses autistics who graduate from college (or possibly a vocational school) and not others who will never do that. The majority of person on the spectrum probably have disabilities that would prevent them for acquiring a skill set, regardless of any alleged societal constraints.
What about when someone with autism is hired, presuming they have the skill set? Do they have an ability to get along with coworkers? Do they have overly loud voices which would be unpleasant for others and prompt their dismissal from the job? Would they have executive functioning problems which might preclude good hygiene and result in their being fired? Neither the author of this piece nor Marcia Scheiner address this issue.
I believe the best possible way for a person on the spectrum, assuming they can achieve the higher education and the skill set, is to become as skilled as possible in a profession by practice and possibly doing an unpaid internship. This is far more sensible than the ridiculous notion of changing society and getting them to overlook an interview process which probably would not even be relevant in hiring if the person had the skill set.
Again, there are no simplistic or easy answers to this.
The article starts out misrepresenting the 1 in 68 number, as do so many people who write about autism. It claims that many of these autistic go on to higher education and are employable, but are unemployed because societal constraints on the hiring process.
The article quotes Marcia Scheiner, president and founder of the organization ASTEP (Asperger Syndrome Training and Employment Program) who discusses how important doing well on an interview is to the hiring process and how persons on the spectrum are at a disadvantage because they don't interview well. I've written about ASTEPpreviously if the interested reader is curious about this organization.
I question how many persons on the spectrum (regardless of whether they have asperger's or autism) really have qualifications right out of college which would enable them to do a variety of jobs. Jobs requiring no paid experience are few and far between, particularly in a bad economy.
If a person has the skill set, I believe they can be hired for a lot of different jobs, despite lack of interviewing skills. I worked sporadically as a medical transcriptionist between 1986 and 2007. To get my foot in the door I had to do piecework as an independent contractor at less than minimum wage. Once I garnered some experience, I was able to get other transcription gigs. No one did extensive interviewing of me for these positions. They were easily able to administer tests to gauge my ability to do the job by giving me a report to transcribe. If you can pass tests like these, you have the job, in spite of a poor ability to interview.
When I was trying to get into the computer field, lack of education and experience led me to fail a test in one company I applied for, that did not get me the job.
I know of one individual on the spectrum who has a math degree and has tried to become an insurance actuary but has failed the preliminary exam which can get you hired. What difference does it make whether he can interview or not?
I know of another individual on the spectrum who stammers when he speaks and probably would not be counted as someone who could do well at job interviews, yet he has had a number of jobs, albeit menial ones. Apparently lack of interviewing skills did not stop him.
One of the main problems I have with this piece, it only addresses autistics who graduate from college (or possibly a vocational school) and not others who will never do that. The majority of person on the spectrum probably have disabilities that would prevent them for acquiring a skill set, regardless of any alleged societal constraints.
What about when someone with autism is hired, presuming they have the skill set? Do they have an ability to get along with coworkers? Do they have overly loud voices which would be unpleasant for others and prompt their dismissal from the job? Would they have executive functioning problems which might preclude good hygiene and result in their being fired? Neither the author of this piece nor Marcia Scheiner address this issue.
I believe the best possible way for a person on the spectrum, assuming they can achieve the higher education and the skill set, is to become as skilled as possible in a profession by practice and possibly doing an unpaid internship. This is far more sensible than the ridiculous notion of changing society and getting them to overlook an interview process which probably would not even be relevant in hiring if the person had the skill set.
Again, there are no simplistic or easy answers to this.
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