I've written a non-fiction book devoted to debunking the neurodiversity movement, a phenomenon, as most readers of this blog know, I find quite odious. My book was rejected by both Jessica Kingsley and Skyhorse publishing. Despite this, I have had some success in publishing some nonfiction articles about issues critical of ND, including two paid articles, one in The Spectator, and the other in Los Angeles Magazine. Steve Silberman's book, though not entirely a neurodiversity preachathon, devoted a large portion of his tome to promoting the ND movement. It was lauded by the New York Times, NPR and was on the best seller list. Lesser known writer Thomas Armstrong has also published a pro-ND book as has Julia Bascom.
Though, to the best of my knowledge, zero anti-ND books have been published, there's a new pro-ND kid in town. Stephen Kapp, an autistic with a doctorate in education, has published a collection of essays written by some of the most prominent members of the neurodiversity movement.
This list of august individuals includes Amelia (formerly Amanda) Baggs, Kathleen Seidel, Martijin Dekker, Ari Ne'eman, Dr. Kapp himself, John Elder Robison, and a number of others.
Some of these individuals, I had not heard anything about in years.
Ms. Baggs has an essay about institutionalization. She's an interesting case as her YouTube video, In My Language, received many hits and she became a prominent figure, appearing in a Wired magazine article and on CNN. She is completely nonverbal in these posted videos. After receiving notoriety, a number of persons who knew her came forward and stated that not only was she completely verbal as an adolescent, but attended high schools for the gifted and attended college at age 16, but apparently lost her speech at age 20, an unusual clinical picture for an autistic person. After these revelations, Baggs went under the radar. With her friend Laura A. Tisoncik, she created the website autistics.org in which they had a cartoon of an aborted fetus in a trashcan with the caption the real meaning of autism prevention, implying that the genetics research done in autism is solely for the purpose of finding a prenatal test so autistic fetuses can be destroyed in utero.
Interestingly, Tisoncik has an article in this compilation also. She talks about starting autistics.org and getting the message out. Something I was not aware of before, is that she may have been self-diagnosed from what she wrote in the article:
So after I explored the links to electronics partscompanies, I clicked back to the website where the author had said he had a syndrome I’d never heard of called Asperger’s Syndrome. The link led to a website created by a parent of a child on the autism spectrum. I read So that was what I was.
She neglects to say whether she followed up this self-realization with any sort of clinical& assessment. She came to this revelation in the mid 90s when she was in her 40s and apparently never had any sort of ASD dx up until that time.
Meg Evans also has an article. She was one of the founding members of the autistic self advocacy movement. She was rumored to be the anonymous blogger, The autistic bitch from hell, who compared autism speaks to the ku klux klan and stated that pro-cure autistics should have their necks wrung and turned into cat food in a blog post with the inflammatory title "autistic uncle toms"
She wrote about a website she and her husband created stating in 2005 that a prenatal test that would be found for autism, similar to the one for Down's syndrome in ten years (2015). This obviously did not come to pass more than fourteen years later. She had a countdown of the number of years, months and days. She took down the website in 2011 when it became apparent that her prediction would not come true. She also claims she heard the word autistic used in reference to her as a child but is vague about diagnosis. She apparently did not become interested in autism until the year 2002. It is unclear if Ms. Evans has ever been professionally diagnosed.
Another article is by an individual in the Netherlands named Martijin Dekker, a computer programmer who started the InLV listserve in the earlier days of the internet and one of the first lists that would provide the genesis of the neurodiversity movement along with the formation of the Autism Network International. I was interested to learn that supposedly Judith Singer and Harvey Blume who are respectively credited for coining the term 'neurodiversity' and giving it publicity were early members of this antiquated website and this is where the word neurodiversity first appeared before Singer wrote her treatises where she first used the word neurodiversity. Dekker seems to believe that Einstein was autistic and that finding treatments for autism would have prevented Einstein from being born. He also uses the Hitler and the jews analogy to argue against a cure for autism. His remarks on an old listserve can be seen here and speaks for itself
An article by Steve Kapp and Ari Ne'eman also appears about their efforts and contributions to the workgroup who devised the DSM V autism diagnostic criteria. This is when Asperger's was eliminated as a dx category in the US. The Autistic Self Advocacy Network which Kapp and Ne'eman represented was in favor of including AS under the autism category in the DSM V and elminating Asperger's. In the article, they state that they were both diagnosed with Asperger's and not autism per se. They talk about the lack of dx for females and minority groups. The persons in the workgroup countered that there was no evidence that autism was underdiagnosed in women from the autism literature. However, they state that literature on socialization in women, completely unrelated to autism, proves or at least gives credence to their hypothesis.
One of the most intriguing lines from their article was:
ASAN had always insisted on a cross-spectrum perspective and consisted of a leader-ship and membership drawn from individuals who had received all three of the diagnoses (as well as some who had been unable to access a diagnosis due to various disparities)
For years, the autistic self advocacy network has encouraged self dx by stating that their college scholarship program was open to people identifying as being on the autism spectrum. Many of its supporters have poohpooed the necessity of getting a clinical dx or stated that it was too difficult or expensive to come by for some persons, particularly in adulthood. Ari Ne'eman and Samantha Crane have both stated they were diagnosed with an ASD. Ms. Crane's dx, happened in around 2005 at about the age of 22 when she first started attending Harvard Law school. She stated she never attended a special ed school. Why, she was not diagnosed earlier in childhood or did not need special ed services is unclear.
However, this seems unprecedented in that this is the first, at least tacit, admission that some of the members and supporters of ASAN are self-diagnosed. This is despite the fact that this is one of the organizations who has permanent seats on the interagency autism coordinating committee and gives the US government advice on autism policy.>A pertinent question is why, if autism is only a disability via the social model and not the medical model would there be a need for a dx and why would Ne'eman and Kapp work with the committee that wrote the DSMV?
The collection also includes an article by John Elder Robison about his experiences as a scientific advisor at autism speaks. Due to constant complaints of no autistic input into the organization, they acquiesced and appointed John Robison, a high school dropout with no knowledge of autism science, to their scientific advisory board. All the other members had doctoral degrees. Though Robison has stated he has an autism dx, by his own admission in the article is not terribly impaired
It was hard to imagine myself as diseased or damaged, but I understood those words made people open their wallets and I knew our community needed help
Robison speaks about how he tried to work with people at autism speaks to change their perspective about autism being a horrible tragedy and wanting to cure the condition. He claimed that all of the scientific advisors at autism speaks had urged the powers that be to change their mission statement to stop using the word 'cure'. He speaks of how offended he was by an op-ed piece written by the late Suzanne Wright stating that 'autistic children were lost' and 'needed to be rescued'. This prompted his resignation from AS. In his article Robison shows incredible contempt for the parents of autistic children whom he claims are running the show and cutting out autistic voices.
There are other chapters in this anthology that i've read but it's a lot to summarize in one blog post, so I think I'll end it here.
Though I learned a few new things, most of the information Kapp and his contributors provide is not novel and are the same tired talking points of the ND movement, who has nothing but contempt for autistic persons (like myself) who want treatment breakthroughs made and a better life for themselves. Not to mention parents of severely autistic kids (those who have greater support needs is the way ND puts it) who people such as Robison and others have a callous attitude toward.
Steve Silberman has publicized this anthology on twitter, but saying previously that an article written by anti-ND autistic Tom Clements was bullshit and lies and people should read Kapp's anthology instead.
Hopefully someday there will be an anthology or some sort of format where those of us in the #autisticdarkweb anti-ND movement will get to tell our side of the story.
Monday, November 11, 2019
Monday, August 5, 2019
Manuel Casanova's new book
I'm pleased to announce that neuroscientist and autism researcher Manuel Casanova has a new book out. Dr. C is a neuroscientist who has done research on post-mortem brains, showing that autistics have abnormalities in structures called minicolumns, where there are too many of them and the cells are more narrow. Also, according to his research, there is a protective membrane around the minicolumns which p;rovide a sort of shower curtain effect. The neurons in this membrane use GABA as a neurotransmitter, which is an inhibitory neurotransmitter and could be the reason autistics engage in self-stimulatory behaviors.
He's also done research on Transcranial magnetic stimulation as a possible treatment for autism.
Unlike most scientists, manuel has a blog called Cortical Chauvinism where he in part explains his research in terms the lay person (such as myself) can understand.
In addition, Manuel criticizes the neurodiversity movement as well as journalist Steve Silberman.
Manuel now has a personal stake in developmental disabilities, as his grandson suffers from a severe genetic disorder resulting in serious neurologic dysfunction.
He's included these posts on cortical chauvinism in book form which is now available from amazon at the above link.
I attempted to publish a 5 star review of the book on Amazon, but for some reason, my review has not been posted yet.
I highly recommend this book and hope others will purchase it. (I purchased a copy, yeah)
He's also done research on Transcranial magnetic stimulation as a possible treatment for autism.
Unlike most scientists, manuel has a blog called Cortical Chauvinism where he in part explains his research in terms the lay person (such as myself) can understand.
In addition, Manuel criticizes the neurodiversity movement as well as journalist Steve Silberman.
Manuel now has a personal stake in developmental disabilities, as his grandson suffers from a severe genetic disorder resulting in serious neurologic dysfunction.
He's included these posts on cortical chauvinism in book form which is now available from amazon at the above link.
I attempted to publish a 5 star review of the book on Amazon, but for some reason, my review has not been posted yet.
I highly recommend this book and hope others will purchase it. (I purchased a copy, yeah)
Wednesday, July 17, 2019
Yuval Levental's piece on neurodiversity published in scientific american
For the past few years or so, the neurodiversity movement has dominated the mainstream media in getting their ideas across with minimal exposure for opposing viewpoints. I've managed to get in a couple of shots. Newsweek ran a profile about me. However the headline "The Hater's Guide to Self-hating" appeared in their print issue. The conservative Spectator Magazine in the UK also published a piece I wrote criticizing ND.
Recently, the magazine Scientific American published a pro-neurodiversity piece by disabilities rights advocate Aiyana Bailin. She claimed there were misconceptions about neurodiversity.
Thomas Clements, one of the people from our side, questioned on twitter whether or not Scientific American could publish a rebuttal piece.
I decided to approach Scientific American to ask them about publishing a piece that I would write, giving the other side of the neurodiversity story. They wrote me back stating they usually just published things by credentialed scientists, but I could submit something to their opinions editor and gave me the email contact. This discouraged me, as I thought the power of ND was allowing Bailin, not a credentialed scientist to do something unprecedented. I decided to take a pass on writing and submitting the op ed piece.
I told Yuval Levental, another person from our side, about this on twitter. He said he'd like to write the piece I declined to write and I gave him the contact info of the people he could reach at Sci American.
I'm happy to report They published Yuval's piece. This is another rare victory for our side and I hope we can continue gaining some success in our uphill battle against the ND movement. An old cliche, but a journey of a thousand miles begins with a few steps.
Recently, the magazine Scientific American published a pro-neurodiversity piece by disabilities rights advocate Aiyana Bailin. She claimed there were misconceptions about neurodiversity.
Thomas Clements, one of the people from our side, questioned on twitter whether or not Scientific American could publish a rebuttal piece.
I decided to approach Scientific American to ask them about publishing a piece that I would write, giving the other side of the neurodiversity story. They wrote me back stating they usually just published things by credentialed scientists, but I could submit something to their opinions editor and gave me the email contact. This discouraged me, as I thought the power of ND was allowing Bailin, not a credentialed scientist to do something unprecedented. I decided to take a pass on writing and submitting the op ed piece.
I told Yuval Levental, another person from our side, about this on twitter. He said he'd like to write the piece I declined to write and I gave him the contact info of the people he could reach at Sci American.
I'm happy to report They published Yuval's piece. This is another rare victory for our side and I hope we can continue gaining some success in our uphill battle against the ND movement. An old cliche, but a journey of a thousand miles begins with a few steps.
Saturday, June 8, 2019
Yuval Levental's pursuit of knowledge
Early in my blogging and postings on usenet newsgroups in the earlier days of the internet, I was a figurative diamond in the rough- one of the few persons with an ASD to take on the ND movement. Occasionally people would email me or write posts on my website's guest book that they were also autistic and had contempt for the neurodiversity movement and they were glad to see me writing about those issues. However, none of these people wanted to join the fray and publicly criticize ND.
Also, about 15 years ago, I wrote an article questioning the autism dx of Bill Gates, Albert, Einstein and Thomas Jefferson promoted by the neurodiversity movement. I got a fair amount of emails and comments, both pro and con about this article.
In recent years I've been gratified that more and more individuals with autism are now coming out and publicly criticizing neurodiversity. One of these people is someone named Yuval Levental.
Some years ago, Yuval sent me an email stating that he'd read my piece about Gates and the others and because of my piece he was inspired to seek help for his autism.
Yuval is one of the few good people who have come out and criticized the neurodiversity movement debunking the mythology espoused by the ND's that all or most autistics don't want to be cured and are adherents to the neurodiversity party line.
Yuval has also been a devoted fan of mine, who worked to promote my novel, "the mu rhythm bluff".
He is someone who has expertise in the ins and outs of Wikipedia and has written multiple Wikipedia articles about me as well as others on our side. He's also contributed to other Wiki articles about NDs and other related matters, helping us get out our side of the story. When the ND thugs tried to get my page removed from Wikipedia and vandalized my page in retaliation for my unfavorable article in Spectator magazine, he worked tirelessly to stop it.
Saying that Yuval has been a most useful ally to our uphill cause is putting it mildly.
That's why I'm pleased to announced that Yuval has recently published a book which serves as a collection of his writings on the subjects of neurodiversity and his pursuit of various treatments which he hoped would mitigate his autism. The title of the book is The Pursuit of Knowledge: My Unconventional Writings on Autism and Neurodiversity.
Most of these writings are already available on Manuel Casanova's blog cortical chauvinism and elsewhere. A few of them are novel.
Yuval has tried various treatments to help himself including plastic surgery, vitamin D and probiotics in the hopes that it would help his autism and other people's. Though I'm skeptical how much these will help, I admire him for trying to experiment in ways to better himself.
Yuval sent me an advanced copy of his book which I've already read.
As of this writing, the book is only available in paperback and not in Kindle. But Yuval tells me that he's going to release a kindle edition at the end of the week.
I plan to purchase the book when it comes out in kindle. I hope other people will purchase this book which provides an interesting story on how Yuval pursued knowledge in neurodiversity, autism and on ways to help treat his problems.
Also, about 15 years ago, I wrote an article questioning the autism dx of Bill Gates, Albert, Einstein and Thomas Jefferson promoted by the neurodiversity movement. I got a fair amount of emails and comments, both pro and con about this article.
In recent years I've been gratified that more and more individuals with autism are now coming out and publicly criticizing neurodiversity. One of these people is someone named Yuval Levental.
Some years ago, Yuval sent me an email stating that he'd read my piece about Gates and the others and because of my piece he was inspired to seek help for his autism.
Yuval is one of the few good people who have come out and criticized the neurodiversity movement debunking the mythology espoused by the ND's that all or most autistics don't want to be cured and are adherents to the neurodiversity party line.
Yuval has also been a devoted fan of mine, who worked to promote my novel, "the mu rhythm bluff".
He is someone who has expertise in the ins and outs of Wikipedia and has written multiple Wikipedia articles about me as well as others on our side. He's also contributed to other Wiki articles about NDs and other related matters, helping us get out our side of the story. When the ND thugs tried to get my page removed from Wikipedia and vandalized my page in retaliation for my unfavorable article in Spectator magazine, he worked tirelessly to stop it.
Saying that Yuval has been a most useful ally to our uphill cause is putting it mildly.
That's why I'm pleased to announced that Yuval has recently published a book which serves as a collection of his writings on the subjects of neurodiversity and his pursuit of various treatments which he hoped would mitigate his autism. The title of the book is The Pursuit of Knowledge: My Unconventional Writings on Autism and Neurodiversity.
Most of these writings are already available on Manuel Casanova's blog cortical chauvinism and elsewhere. A few of them are novel.
Yuval has tried various treatments to help himself including plastic surgery, vitamin D and probiotics in the hopes that it would help his autism and other people's. Though I'm skeptical how much these will help, I admire him for trying to experiment in ways to better himself.
Yuval sent me an advanced copy of his book which I've already read.
As of this writing, the book is only available in paperback and not in Kindle. But Yuval tells me that he's going to release a kindle edition at the end of the week.
I plan to purchase the book when it comes out in kindle. I hope other people will purchase this book which provides an interesting story on how Yuval pursued knowledge in neurodiversity, autism and on ways to help treat his problems.
Tuesday, April 30, 2019
The Concept of Cure and prevention divides the autism community: It should not have to.
Neurodiversity has completely taken over all facets of the autism discourse. Autism speaks reversed itself saying they will no longer look for a cure or prevention of autism. They appointed two neurodiversity proponents alleging to have autism to their board of directors. One has said that autism is a superpower. The other has said that autism is not a disability, but a strength. The Simons Foundation's newsletter, Spectrum routinely publishes articles from some of the most hardcore neurodiversity proponents such as Julia Bascom, Shannon Rosa and Sara Luterman. The U.S. Government no longer will combat autism and has appointed seven neurodiversity proponents as public members, six of them identifying as being on the autism spectrum. As far as I know, they've appointed one anti-vaxxer, one or two parents who support the concept of prevention and cure and zero pro-cure, pro-treatment autistics, though two applied to be on the IACC and were turned down. They also have multibillionaire George Soros on their side who has given over $300,000 to the autistic self advocacy network, the premiere neurodiversity organization in the United States.
Last, but as far as this post goes, not least, they have completely taken over the International Society of Autism Research. Their president is Simon Baron-Cohen, a neurodiversity proponent. On their board of directors is well-known neurodiversity proponent John Elder Robison who has recently called for an adult prevalence study and should be in the Guiness Book of World Records for writing a journal article with the most factual errors of all time. Autism Research, INSAR's journal, published his article.
However, this is not enough for them. In a redux of SB's BS, Simon Baron Cohen has published an article attempting to make a case for why neurodiversity is a legitimate philosophy and should not be controversial He gives a rehash of all of his old and ignorant talking points.
In trying to say that the autistic brain is a variation of normal, he again neglects to cite the findings of gliosis in Bailey's postmortem studies. This is a response of glial cells to damage of neuronal cells, clearly a pathology and not just a different form of brain wiring. He neglects to cite the work of Wegiel which finds heterotopias in four autistic brains and none of the controls. This is where germinal cells fail to migrate to their proper spots during fetal development, causing seizures and other brain abnormalities. It is no less of a normal variation than an ectopic pregnancy or inguinal hernia.
He goes on to talk about the superiority of autistics on the block design subtest of the Wechsler as showing autism to be a variation of normal, but neglects to mention the subpar scores on the comprehension subtest which results in autistics having severe social judgment impairments and getting into trouble in social situations.
In his statements about genetic variations, he neglects to discuss the research showing autism in a number of cases is the result of de novo mutations, such as the research of Jonathan Sebat demonstrates. He neglects to discuss the evidence for environmental factors in autism such as the California twin studies and the work of Tanai in Japan showing much larger concordance in fraternal twins than in non twin siblings, even though they have the same genetic makeup. Not to mention thalidomide and various types of birth complications which have been found in association with autism.
However, these are old talking points of SB's BS and I've commented on them before
What's new is that he says the concept of neurodiversity should not be controversial, but apparently the concepts of curing autism and prevention should be. This man who attempts to be the voice of reason has stated anyone who wants to cure and prevent autism is no different than a nazi or a member of the Ku Klux Klan, Ergo, cure and prevention are controversial positions and neurodiversity is a benign thought that should have no controversy whatsoever.
He has admitted there are autistic people who can't speak and have other serious impairments. Yet, the neurodiversity movement he emboldens has constantly insulted parents who want cures for their children or to prevent other children from going through the hell they have gone through.
Why should wanting to cure self-injurious behavior, seizures, etc. be controversial?
Even a cure for more mild problems such as the one's I've had with holding down jobs, fine motor problems, celibacy, etc is controversial? Why should this be so?
Perhaps it's time to rethink what should be controversial and what shouldn't be in the field of autism.
Last, but as far as this post goes, not least, they have completely taken over the International Society of Autism Research. Their president is Simon Baron-Cohen, a neurodiversity proponent. On their board of directors is well-known neurodiversity proponent John Elder Robison who has recently called for an adult prevalence study and should be in the Guiness Book of World Records for writing a journal article with the most factual errors of all time. Autism Research, INSAR's journal, published his article.
However, this is not enough for them. In a redux of SB's BS, Simon Baron Cohen has published an article attempting to make a case for why neurodiversity is a legitimate philosophy and should not be controversial He gives a rehash of all of his old and ignorant talking points.
In trying to say that the autistic brain is a variation of normal, he again neglects to cite the findings of gliosis in Bailey's postmortem studies. This is a response of glial cells to damage of neuronal cells, clearly a pathology and not just a different form of brain wiring. He neglects to cite the work of Wegiel which finds heterotopias in four autistic brains and none of the controls. This is where germinal cells fail to migrate to their proper spots during fetal development, causing seizures and other brain abnormalities. It is no less of a normal variation than an ectopic pregnancy or inguinal hernia.
He goes on to talk about the superiority of autistics on the block design subtest of the Wechsler as showing autism to be a variation of normal, but neglects to mention the subpar scores on the comprehension subtest which results in autistics having severe social judgment impairments and getting into trouble in social situations.
In his statements about genetic variations, he neglects to discuss the research showing autism in a number of cases is the result of de novo mutations, such as the research of Jonathan Sebat demonstrates. He neglects to discuss the evidence for environmental factors in autism such as the California twin studies and the work of Tanai in Japan showing much larger concordance in fraternal twins than in non twin siblings, even though they have the same genetic makeup. Not to mention thalidomide and various types of birth complications which have been found in association with autism.
However, these are old talking points of SB's BS and I've commented on them before
What's new is that he says the concept of neurodiversity should not be controversial, but apparently the concepts of curing autism and prevention should be. This man who attempts to be the voice of reason has stated anyone who wants to cure and prevent autism is no different than a nazi or a member of the Ku Klux Klan, Ergo, cure and prevention are controversial positions and neurodiversity is a benign thought that should have no controversy whatsoever.
He has admitted there are autistic people who can't speak and have other serious impairments. Yet, the neurodiversity movement he emboldens has constantly insulted parents who want cures for their children or to prevent other children from going through the hell they have gone through.
Why should wanting to cure self-injurious behavior, seizures, etc. be controversial?
Even a cure for more mild problems such as the one's I've had with holding down jobs, fine motor problems, celibacy, etc is controversial? Why should this be so?
Perhaps it's time to rethink what should be controversial and what shouldn't be in the field of autism.
Friday, April 19, 2019
a pet peeve of mine
There's a pet peeve of mine that I think of from time to time, but an urge to vent about this has come to me. I tweeted a few tweets about it on twitter, but the character limitation and format of twitter really limit my writing about this. Facebook is another option. But I'm pretty pissed off at FB for deleting a couple of my posts and banning my blog, so not sure I'm ever going to post anything on there again.
For this reason, I've decided to write a blog post on the subject, though I've not been blogging as much in recent years as in the past.
I'm fed up with people giving me easy/pat suggestions for what I can do to help my disability.
The first two that I've heard the most frequently I've written about previously. For those who aren't inclined to read the whole post, I'll recap.
1. Because you get fired, tell employers about your disability. I tried it once, didn't help, I got fired anyhow. I'm retired now, highly improbable I'll ever work again, so perhaps it's moot now, but the annoyance of having to hear this repeatedly has not gone away.
2. Because you can't find a girlfriend, find an autistic girlfriend. No place to find one and I sure don't want a female ND. and contrary to ND mythology, there is about a 4:1 ratio of male autistics to females. So if the girls were interested the odds would be good for them, but they're not because the goods are odd.
In the above-linked post, I wrote that I think autism may have given me the savant skill of prophecy because I can so easily predict what people will say in response to these issues.
There are others I've heard, but not with the same frequency.
3. Try therapy. Had 18 years of it. Been there, done that.
4. get social skills training to enable you to find a girlfriend. Problem is more complex than that, too difficult to explain in this blog post.
5. Go to church. One person has told me an autistic boy whose parents have taken him to her church is doing a lot better now. No thanks, I went to church with some people one time, took communion and it would appear I drank to my own damnation.
6. Take SSRI drugs. I did. Two different ones, Prozac and Lexipro, no help there.
7. Take Elavil to relieve depression. This was in the mid 80s before SSRI's became available. I'm depressed because autism has made my life so difficult, not because I have an affective disorder.
8. Go to an autistic social club to meet autistic women (I guess because I have little chance with a normal woman or I'm ill-suited for her). Meetup shows where groups like this are. This is a subset of item number two in the two most common suggestions I've heard. But this means I'd have to go to the Los Angeles chapters of GRASP or ASAN and meet female ND's. No thanks.
9. How do I expect autistic (ND) girls to like me if I'm going to have these attitudes. I don't expect ND women to like me and if they don't it's fine with me.
10. If I weren't such a jerk and did not talk about disgusting things like autistics who smear feces, women would not hate me so much. (this was at least by far the most amusing of the lot)
11. Get a typing tutor program so you can learn how not to make careless errors in data entry.
There are probably a few others, but I can't think of them off the top of my head. I also think anyone reading this would get the idea by now.
I've lived with this disability for more than 60 years now. I know what the situation is better than the person looking in, believe me. I really resent people who know nothing about my life giving me pat advice. There's really not a whole lot I can do about these problems. Nothing's going to change the hopelessness of my situation and likely other DD persons who have to live with their disability.
But I know that this won't be the last I ever hear suggestions. I'm sure I'll continue to hear the same tired old ones. Especially the first two. I'll likely hear a few new ones down the line also. Just something I guess I'm going to have to learn to live with.
Thanks blog readers for allowing me to vent.
For this reason, I've decided to write a blog post on the subject, though I've not been blogging as much in recent years as in the past.
I'm fed up with people giving me easy/pat suggestions for what I can do to help my disability.
The first two that I've heard the most frequently I've written about previously. For those who aren't inclined to read the whole post, I'll recap.
1. Because you get fired, tell employers about your disability. I tried it once, didn't help, I got fired anyhow. I'm retired now, highly improbable I'll ever work again, so perhaps it's moot now, but the annoyance of having to hear this repeatedly has not gone away.
2. Because you can't find a girlfriend, find an autistic girlfriend. No place to find one and I sure don't want a female ND. and contrary to ND mythology, there is about a 4:1 ratio of male autistics to females. So if the girls were interested the odds would be good for them, but they're not because the goods are odd.
In the above-linked post, I wrote that I think autism may have given me the savant skill of prophecy because I can so easily predict what people will say in response to these issues.
There are others I've heard, but not with the same frequency.
3. Try therapy. Had 18 years of it. Been there, done that.
4. get social skills training to enable you to find a girlfriend. Problem is more complex than that, too difficult to explain in this blog post.
5. Go to church. One person has told me an autistic boy whose parents have taken him to her church is doing a lot better now. No thanks, I went to church with some people one time, took communion and it would appear I drank to my own damnation.
6. Take SSRI drugs. I did. Two different ones, Prozac and Lexipro, no help there.
7. Take Elavil to relieve depression. This was in the mid 80s before SSRI's became available. I'm depressed because autism has made my life so difficult, not because I have an affective disorder.
8. Go to an autistic social club to meet autistic women (I guess because I have little chance with a normal woman or I'm ill-suited for her). Meetup shows where groups like this are. This is a subset of item number two in the two most common suggestions I've heard. But this means I'd have to go to the Los Angeles chapters of GRASP or ASAN and meet female ND's. No thanks.
9. How do I expect autistic (ND) girls to like me if I'm going to have these attitudes. I don't expect ND women to like me and if they don't it's fine with me.
10. If I weren't such a jerk and did not talk about disgusting things like autistics who smear feces, women would not hate me so much. (this was at least by far the most amusing of the lot)
11. Get a typing tutor program so you can learn how not to make careless errors in data entry.
There are probably a few others, but I can't think of them off the top of my head. I also think anyone reading this would get the idea by now.
I've lived with this disability for more than 60 years now. I know what the situation is better than the person looking in, believe me. I really resent people who know nothing about my life giving me pat advice. There's really not a whole lot I can do about these problems. Nothing's going to change the hopelessness of my situation and likely other DD persons who have to live with their disability.
But I know that this won't be the last I ever hear suggestions. I'm sure I'll continue to hear the same tired old ones. Especially the first two. I'll likely hear a few new ones down the line also. Just something I guess I'm going to have to learn to live with.
Thanks blog readers for allowing me to vent.
Thursday, April 4, 2019
Problems with Adult autism and Prevalence: John Elder Robison to the rescue
Within the autism community, there's a heated debate on whether or not the prevalence of autism has remained stable since Kanner first wrote about the condition in the early 1940s. A few prevalence studies published between 1966 and 1985 estimated the prevalence at about 1 in 2,500. Many years later, other studies have estimated a prevalence rate of autism at 1 in 100 or higher. The latest CDC numbers are 1 in 59. Some persons believe that the main reason for the increase is greater identification of individuals and change in diagnostic criteria. Others believe there is some sort of environmental toxin or toxins, driving a dramatic increase in numbers in a short time frame. There is no consensus on whether or not there are far less autistics born in 1970 and earlier than those born in 1990 and later.
Autism is usually considered a disorder of childhood. However, autistics are not Peter Pans who remain children forever. Those of us with autism grow up into adults. Assuming there's been a genuine increase in numbers, the huge increase started with people born in 1990 and later. Many of these individuals are now adults. Children age out of services provided by the IDEA when they turn 21. Some state regional centers provide group home funding once the more severe individuals reach adulthood. There have been published reports of autistics having severe health issues as opposed to the general population as well as much higher rates of suicide. How can we identify these adults, find out what their issues are and help them?
When Hillary Clinton ran for president in 2016, she proposed doing an adult prevalence study on autism.
IACC public member John Elder Robison has written a take on this topic.
In short, JER has addressed the problems of health issues and suicide, etc. in autistic adults. He proposes to spend millions of dollars in taxpayer money doing an adult prevalence study to identify this population and find out what their issues are.
He proposes to combine methodologies of two prominent studies to find the prevalence of autism in adults. First are the reports delivered every two years by the autism and developmental disabilities network monitoring which assesses prevalence in autistic children every two years who are 8 years old at the time the survey is carried out. The second is a survey carried out by T. Brugha, et. al. that assessed the prevalence of autistic adults (16 years and older) in the UK. They found a nearly 1% prevalence, which was about the same as had been reported in autistic children at the time. You can read the survey in its entirety here.
How valid were these two surveys in assessing the prevalence of autism in children and adults respectively? Will Robison's recommendations help us find a valid adult prevalence? Do his talking points have any credibility? I will attempt to answer these questions in this blog post.
On careful scrutiny of Robison's talking points, it seems he's made many factually inaccurate statements. He appears to have not even read the primary sources of the articles he cites.
Robison states:
Brugha et al. [2011] found very high rates of autism among older adults previously diagnosed with learning disabilities, and they found alarge number of autistic people living in group or institu-tional settings. Neither of thosefindings are surprising.
Actually Brugha et. al found 19 cases out of 7,461 persons surveyed in the first phase of his study in a country of 30 million population. Based on a statistical analysis, which at best was educated guesswork on his part, he surmised that there were an additional 55 cases on top of the 19 that were assessed using the ADOS to diagnosis their autism that were in the survey. Most of these had intact intelligence though there were some who responded to the survey by proxy due to being too disabled. These persons did not live in institutional settings but in regular households. I realize though JER's standard for "very high" might be different than mine.
According to Brugha et al. [2011], with our current bestestimates of prevalence, roughly one in 50 men, or onein 75 people of all ages are on the autism spectrum. Thisis consistent with contemporaneous prevalence estimatesfor children, such as the 1 in 56 reported by the CDC’sADDM (Autism and Developmental Disabilities Monitor-ing Network)
Actually Brugha found not one in 75, but 98 out of 1000 or slightly less than 1 in 100. The CDC's 2018 report found 26.6 in 1000 boys or one in 38, rounded to the nearest non-decimal number. /The CDC's number in 2018 was actually 1 in 59 not 1 in 56. These might be considered minor factual errors, but I feel as an autism public policy advisor at taxpayer expense, Robison should get these figures right.
He uses the study by Lisa Croen to state that there were only less than one tenth of the adults there should be in that survey. I don't believe a sample of the general population and a selected sample of people in the Kaiser insurance program is an apples to apples comparison, as there would be selection bias as to who would have this insurance or wouldn't. Adults outside the Kaiser system might have MediCal and seek health at other providers or not have insurance of any kind. Another possibility is that there is not a 1% prevalence or higher in this age group as has been found in children.
Robison states:
With some autisticadults described as tech geniuses while others require24/7 support for basic living, parents rightly wonder whatthe future holds for their autistic children. We owe it tothem tofind some answer
How can an adult prevalence study predict what the future holds for autistic children? How will spending taxpayer money in this manner do this? You don't need a multimillion dollar taxpayer financed study to know that the prognosis for most autistic children is very poor.
In conversation with autistic people, I have often beentold that adults deliberately keep their autism diagnosisout of the medical record, to avoid“having it usedagainst them.”Perceived threats include higher lifeinsurance premiums, higher health insurance premiums,and possible denial of professional licenses or even jobs.Those are all valid concerns and suggest there may be agood number of autistic adults who are aware of theircondition but choose tofly under the radar.
John may not be aware of this, but under the health insurance privacy protection act, it's a federal offense for a hospital or doctor to share medical records without someone's consent. Very few autistic people have children so life insurance would not be a concern. Because of lobbying from autism speaks, insurance now pays for many autism treatments, but it did not in the past, so it's unlikely an autism diagnosis would result in higher insurance premiums for a pre-existing condition. This is even less of a concern since the affordable health care act was passed. Very few autistic people will become eligible for any type of professional licensing. A prospective employer is unlikely to ask someone for their medical records and again under HIPPA it's illegal for a hospital or insurance company to produce these without the person's consent.
A few years ago, researchers believed most autistic peoplewere intellectually disabled. That belief was founded on alimited understanding—they only recognized a small part ofthe autism spectrum as we know it today. Now that our sam-ple is larger, we understand that the average IQ of the autisticpopulation is much closer to that of the general population
Actually only 1% of the population has an intellectual disability, whereas probably at least one in three autistic persons has one. It is probably closer to 40%. This includes findings from the ADDM surveys that Robison takes such high stock in.
In addition to the 1% prevalence of adults in the Brugha study just being a guess, this survey has other problems. It turns out the AQ-20, an abridged version of Simon Baron Cohen's AQ test, was a very poor predictor of who is and who isn't autistic. The blogger autism jabberwocky wrote about this so it would appear the Brugha survey, admitted by the author himself, has no credibility whatsoever.
The authors divided their prevalence data into three age groups, stating there was no difference in prevalence between the groups. But with a sample of only 19 people it does not really have the statistical power to say this.
It appears John Robison just read portions of the abstract of the study without reading Brugha's work in its entirety.
John Also wants to use the ADDM reports as a model for his plan to assess adult prevalence. These reports, published every two years cost the American taxpayers 5 million dollars a year. The reports only cover a cross section of the entire USA. They use states such as New Jersey each year, which as a more generous service delivery, providing an incentive for the parents of children to get an autism dx. This state only has a fraction of the population of the entire USA and thus skews the average. Just a small percentage of the united states instead of the entire country is used to assess these prevalence numbers. Also, a significant percentage, maybe as much as 20% in some years of the autism cases are not actually diagnosed. Rather the epidemiologists who are not trained clinicians and have never even seen the actual 8 year old children rely on health and school records to come to the determination that these children are autistic and provide them as part of the prevalence numbers.
To me it is worrisome that JER can get articles such as these that pass peer review in journals of questionable quality. It troubles me that he can carry out his activities at taxpayer expense.
Another point to ponder is whether or not JER's motivation in making this proposal is to actually produce data that will be of use to service providers and others to help autistic adults. Hillary Clinton's proposal of an adult prevalence study came after a conference call with ASAN. The neurodiversity movement has insisted that autism is a natural variation and 100% genetic. This is despite evidence of studies of fraternal twins showing higher rates of concordance than non twin siblings as well as environmental insults such as thalidomide showing to cause autism. These argue against an exclusively 100% genetic component. If a neurodiversity sponsored study found an adult prevalence rate identical to those of children born in 2000 or later, this would certainly bolster their hypothesis. John has an intimate friendship with Alex Plank and other ND extremists. If you go on his twitter and look at his tweets and replies, you can see some of the most radical ND proponents who block those who disagree with him are having dialogues with him. Could this be at least a factor in his desire for an adult prevalence study?
My own take on an adult prevalence study is that it's like looking for a needle in a haystack. Adults don't present to special ed schools, clinics etc. So it's impossible to do the aggressive case finding that the CDC does to find people over the age of 21 who are on the spectrum. I believe the question on whether or not there are just as many autistics born in 1970 or earlier as opposed to 1990 or later will never be resolved. I don't believe a valid prevalence study is possible to do on this group. There is no point in spending American tax dollars on this endeavor that the British did on the Brugha surveys and study.
Are JER's proposals to spend millions more on taxpayer dollars, based on a model of two different troubling epidemiologic studies worth it? Is this a person who should be making policy recommendations for autism at taxpayer expense? Autism's Gadfly does not think so.
Autism is usually considered a disorder of childhood. However, autistics are not Peter Pans who remain children forever. Those of us with autism grow up into adults. Assuming there's been a genuine increase in numbers, the huge increase started with people born in 1990 and later. Many of these individuals are now adults. Children age out of services provided by the IDEA when they turn 21. Some state regional centers provide group home funding once the more severe individuals reach adulthood. There have been published reports of autistics having severe health issues as opposed to the general population as well as much higher rates of suicide. How can we identify these adults, find out what their issues are and help them?
When Hillary Clinton ran for president in 2016, she proposed doing an adult prevalence study on autism.
IACC public member John Elder Robison has written a take on this topic.
In short, JER has addressed the problems of health issues and suicide, etc. in autistic adults. He proposes to spend millions of dollars in taxpayer money doing an adult prevalence study to identify this population and find out what their issues are.
He proposes to combine methodologies of two prominent studies to find the prevalence of autism in adults. First are the reports delivered every two years by the autism and developmental disabilities network monitoring which assesses prevalence in autistic children every two years who are 8 years old at the time the survey is carried out. The second is a survey carried out by T. Brugha, et. al. that assessed the prevalence of autistic adults (16 years and older) in the UK. They found a nearly 1% prevalence, which was about the same as had been reported in autistic children at the time. You can read the survey in its entirety here.
How valid were these two surveys in assessing the prevalence of autism in children and adults respectively? Will Robison's recommendations help us find a valid adult prevalence? Do his talking points have any credibility? I will attempt to answer these questions in this blog post.
On careful scrutiny of Robison's talking points, it seems he's made many factually inaccurate statements. He appears to have not even read the primary sources of the articles he cites.
Robison states:
Brugha et al. [2011] found very high rates of autism among older adults previously diagnosed with learning disabilities, and they found alarge number of autistic people living in group or institu-tional settings. Neither of thosefindings are surprising.
Actually Brugha et. al found 19 cases out of 7,461 persons surveyed in the first phase of his study in a country of 30 million population. Based on a statistical analysis, which at best was educated guesswork on his part, he surmised that there were an additional 55 cases on top of the 19 that were assessed using the ADOS to diagnosis their autism that were in the survey. Most of these had intact intelligence though there were some who responded to the survey by proxy due to being too disabled. These persons did not live in institutional settings but in regular households. I realize though JER's standard for "very high" might be different than mine.
According to Brugha et al. [2011], with our current bestestimates of prevalence, roughly one in 50 men, or onein 75 people of all ages are on the autism spectrum. Thisis consistent with contemporaneous prevalence estimatesfor children, such as the 1 in 56 reported by the CDC’sADDM (Autism and Developmental Disabilities Monitor-ing Network)
Actually Brugha found not one in 75, but 98 out of 1000 or slightly less than 1 in 100. The CDC's 2018 report found 26.6 in 1000 boys or one in 38, rounded to the nearest non-decimal number. /The CDC's number in 2018 was actually 1 in 59 not 1 in 56. These might be considered minor factual errors, but I feel as an autism public policy advisor at taxpayer expense, Robison should get these figures right.
He uses the study by Lisa Croen to state that there were only less than one tenth of the adults there should be in that survey. I don't believe a sample of the general population and a selected sample of people in the Kaiser insurance program is an apples to apples comparison, as there would be selection bias as to who would have this insurance or wouldn't. Adults outside the Kaiser system might have MediCal and seek health at other providers or not have insurance of any kind. Another possibility is that there is not a 1% prevalence or higher in this age group as has been found in children.
Robison states:
With some autisticadults described as tech geniuses while others require24/7 support for basic living, parents rightly wonder whatthe future holds for their autistic children. We owe it tothem tofind some answer
How can an adult prevalence study predict what the future holds for autistic children? How will spending taxpayer money in this manner do this? You don't need a multimillion dollar taxpayer financed study to know that the prognosis for most autistic children is very poor.
In conversation with autistic people, I have often beentold that adults deliberately keep their autism diagnosisout of the medical record, to avoid“having it usedagainst them.”Perceived threats include higher lifeinsurance premiums, higher health insurance premiums,and possible denial of professional licenses or even jobs.Those are all valid concerns and suggest there may be agood number of autistic adults who are aware of theircondition but choose tofly under the radar.
John may not be aware of this, but under the health insurance privacy protection act, it's a federal offense for a hospital or doctor to share medical records without someone's consent. Very few autistic people have children so life insurance would not be a concern. Because of lobbying from autism speaks, insurance now pays for many autism treatments, but it did not in the past, so it's unlikely an autism diagnosis would result in higher insurance premiums for a pre-existing condition. This is even less of a concern since the affordable health care act was passed. Very few autistic people will become eligible for any type of professional licensing. A prospective employer is unlikely to ask someone for their medical records and again under HIPPA it's illegal for a hospital or insurance company to produce these without the person's consent.
A few years ago, researchers believed most autistic peoplewere intellectually disabled. That belief was founded on alimited understanding—they only recognized a small part ofthe autism spectrum as we know it today. Now that our sam-ple is larger, we understand that the average IQ of the autisticpopulation is much closer to that of the general population
Actually only 1% of the population has an intellectual disability, whereas probably at least one in three autistic persons has one. It is probably closer to 40%. This includes findings from the ADDM surveys that Robison takes such high stock in.
In addition to the 1% prevalence of adults in the Brugha study just being a guess, this survey has other problems. It turns out the AQ-20, an abridged version of Simon Baron Cohen's AQ test, was a very poor predictor of who is and who isn't autistic. The blogger autism jabberwocky wrote about this so it would appear the Brugha survey, admitted by the author himself, has no credibility whatsoever.
The authors divided their prevalence data into three age groups, stating there was no difference in prevalence between the groups. But with a sample of only 19 people it does not really have the statistical power to say this.
It appears John Robison just read portions of the abstract of the study without reading Brugha's work in its entirety.
John Also wants to use the ADDM reports as a model for his plan to assess adult prevalence. These reports, published every two years cost the American taxpayers 5 million dollars a year. The reports only cover a cross section of the entire USA. They use states such as New Jersey each year, which as a more generous service delivery, providing an incentive for the parents of children to get an autism dx. This state only has a fraction of the population of the entire USA and thus skews the average. Just a small percentage of the united states instead of the entire country is used to assess these prevalence numbers. Also, a significant percentage, maybe as much as 20% in some years of the autism cases are not actually diagnosed. Rather the epidemiologists who are not trained clinicians and have never even seen the actual 8 year old children rely on health and school records to come to the determination that these children are autistic and provide them as part of the prevalence numbers.
To me it is worrisome that JER can get articles such as these that pass peer review in journals of questionable quality. It troubles me that he can carry out his activities at taxpayer expense.
Another point to ponder is whether or not JER's motivation in making this proposal is to actually produce data that will be of use to service providers and others to help autistic adults. Hillary Clinton's proposal of an adult prevalence study came after a conference call with ASAN. The neurodiversity movement has insisted that autism is a natural variation and 100% genetic. This is despite evidence of studies of fraternal twins showing higher rates of concordance than non twin siblings as well as environmental insults such as thalidomide showing to cause autism. These argue against an exclusively 100% genetic component. If a neurodiversity sponsored study found an adult prevalence rate identical to those of children born in 2000 or later, this would certainly bolster their hypothesis. John has an intimate friendship with Alex Plank and other ND extremists. If you go on his twitter and look at his tweets and replies, you can see some of the most radical ND proponents who block those who disagree with him are having dialogues with him. Could this be at least a factor in his desire for an adult prevalence study?
My own take on an adult prevalence study is that it's like looking for a needle in a haystack. Adults don't present to special ed schools, clinics etc. So it's impossible to do the aggressive case finding that the CDC does to find people over the age of 21 who are on the spectrum. I believe the question on whether or not there are just as many autistics born in 1970 or earlier as opposed to 1990 or later will never be resolved. I don't believe a valid prevalence study is possible to do on this group. There is no point in spending American tax dollars on this endeavor that the British did on the Brugha surveys and study.
Are JER's proposals to spend millions more on taxpayer dollars, based on a model of two different troubling epidemiologic studies worth it? Is this a person who should be making policy recommendations for autism at taxpayer expense? Autism's Gadfly does not think so.
Sunday, March 24, 2019
The neurodiversity movement gets my blog banned from Facebook
The neurodiversity movement has used their filthy tentacles to ensnare many different things. These include the Federal government of the United States, Autism Speaks, the Simon Foundations' Spectrum Magazine and now Facebook.
Regular readers of my blog remember that I've written about Facebook on two different occasions deleting some pro-cure (of autism) posts at the behest of the neurodiversity movement. I wrote about this previously In response to this, I deactivated my Facebook account, not sure when I'd return. Five days after I deactivated my account, out of unconscious habit, I relogged back in and activated it and have remained on for a while, posting sparingly.
A few days ago, Facebook reached a low in banning my blog. When I write a new blog post, I usually publicize it on both Facebook and Twitter. When I tried to link my last blog post on my Facebook page I got a message saying it did not meet with their community standards. These include hate speech, people advocating violence and putting pornography on facebook. so now autism's gadfly falls into this nefarious category. As a test, I attempted to post the URL www.autismgadfly.blogspot.com in a facebook post without linking to any specific post. Again, I got this message. In response to this, I've once again deactivated my facebook account. I may return at some point, but I guess I'm going to have to try to not to log onto facebook, at least for a while. I might reactivate the account at some point and then see about not using it once it's active, but still don't know what I will do.
One person asked me about the details and if there was any way I could inquire as to why facebook did this. The answer is that the only recourse Facebook offers is that you can ask for a review of the post they allege violates their community standards. I did this, but now that my account is not active at the current time I'm not sure what their response will be if any. As far as directly contacting Facebook to ask for an explanation, this is not really possible. Facebook does not really give information where you can specifically contact them. With more than a billion users, they don't have the time, resources, or inclination to answer queries about problems people have with their platform, particularly the arbitrary censorship that recently happened to me.
I'm trying to ponder the answer to the question why now. My last two posts may have been controversial, but nothing out of the ordinary for autism's gadfly. In response to Amy Schumer's husband allegedly having an ASD, I wrote a post suggesting that some people alleging to be autistic may have factitious syndrome. However, I don't think this post was up long enough for anyone to take notice and immediately complain FB and have them ban my blog. The post before that dealt with Julia Bascom's effort to have as many women diagnosed with autism as possible, stating the old neurodiversity trope that autism is underestimated in women and that the just as many women are autistic as men, despite the reported 3:1 to 4:1 gender imbalance reported in the literature. Not sure if either of these two posts were the tipping point for neurodiversity activists or not.
In recent months, my profile increased just a little bit when I had an unfavorable article about the ND
movement published in spectator magazine. In response to this someone filed a bogus complaint with twitter, claiming my posts violated their terms of service. Twitter emailed me about this saying there was no basis for this claim. Next, people repeatedly vandalized and defaced my Wikipedia page. Because of this Yuval, who maintains my page, inquired with Wikipedia for giving my page their highest level of protection possible which they did. Maybe I should flattered by this newest development in that I may be finally making an impact and the ND movement certainly does not want the truth about how viciously evil they are to become well known.
It seems this censorship has started to reach a new plateau with various autism books that propose bogus treatments for autism being banned from amazon. The anti-vax documentary callous disregard has also been taken off amazon. Various posts from the anti-vaxers have been deleted from various social media sites.
Though I don't believe the FDA should allow chelatiuon and other questionable treatments, and I don't believe vaccines cause autism for the most part, this censorship and its slippery slope does concern me.
On Twitter, I pondered how soon would this happen to me. Would Amazon purge my novel, the mu rhythm bluff from its site. Would Google delete this blog, as one ND proponent vowed he said he'd be able to accomplish. John Robison, asked me if I had any reason to believe that Amazon and/or Google had considered such action. I replied, seriously no, but with all the power he and other NDs had acquired, I did not know what the future bode for me.
Shortly afterwards, Facebook banned my blog.
So far, I have only had problems with Facebook and not with any other site or platform, but that could easily change, and as I said, I don't know what the future bodes for me and my crusade against this insidious movement that causes so much harm to autistics and their families and does no good.
On Twitter, I wondered what would happen if such censorship were directed at the neurodiversity movement. One of my followers gave a concise and what is probably the definitive answer: World War Three.
ADDENDUM: I reactivated my FB account and posted URL to my blog as a test, it seems the ban's
been lifted. But I'm still really pissed this happened and may deactivate the account again.
Regular readers of my blog remember that I've written about Facebook on two different occasions deleting some pro-cure (of autism) posts at the behest of the neurodiversity movement. I wrote about this previously In response to this, I deactivated my Facebook account, not sure when I'd return. Five days after I deactivated my account, out of unconscious habit, I relogged back in and activated it and have remained on for a while, posting sparingly.
A few days ago, Facebook reached a low in banning my blog. When I write a new blog post, I usually publicize it on both Facebook and Twitter. When I tried to link my last blog post on my Facebook page I got a message saying it did not meet with their community standards. These include hate speech, people advocating violence and putting pornography on facebook. so now autism's gadfly falls into this nefarious category. As a test, I attempted to post the URL www.autismgadfly.blogspot.com in a facebook post without linking to any specific post. Again, I got this message. In response to this, I've once again deactivated my facebook account. I may return at some point, but I guess I'm going to have to try to not to log onto facebook, at least for a while. I might reactivate the account at some point and then see about not using it once it's active, but still don't know what I will do.
One person asked me about the details and if there was any way I could inquire as to why facebook did this. The answer is that the only recourse Facebook offers is that you can ask for a review of the post they allege violates their community standards. I did this, but now that my account is not active at the current time I'm not sure what their response will be if any. As far as directly contacting Facebook to ask for an explanation, this is not really possible. Facebook does not really give information where you can specifically contact them. With more than a billion users, they don't have the time, resources, or inclination to answer queries about problems people have with their platform, particularly the arbitrary censorship that recently happened to me.
I'm trying to ponder the answer to the question why now. My last two posts may have been controversial, but nothing out of the ordinary for autism's gadfly. In response to Amy Schumer's husband allegedly having an ASD, I wrote a post suggesting that some people alleging to be autistic may have factitious syndrome. However, I don't think this post was up long enough for anyone to take notice and immediately complain FB and have them ban my blog. The post before that dealt with Julia Bascom's effort to have as many women diagnosed with autism as possible, stating the old neurodiversity trope that autism is underestimated in women and that the just as many women are autistic as men, despite the reported 3:1 to 4:1 gender imbalance reported in the literature. Not sure if either of these two posts were the tipping point for neurodiversity activists or not.
In recent months, my profile increased just a little bit when I had an unfavorable article about the ND
movement published in spectator magazine. In response to this someone filed a bogus complaint with twitter, claiming my posts violated their terms of service. Twitter emailed me about this saying there was no basis for this claim. Next, people repeatedly vandalized and defaced my Wikipedia page. Because of this Yuval, who maintains my page, inquired with Wikipedia for giving my page their highest level of protection possible which they did. Maybe I should flattered by this newest development in that I may be finally making an impact and the ND movement certainly does not want the truth about how viciously evil they are to become well known.
It seems this censorship has started to reach a new plateau with various autism books that propose bogus treatments for autism being banned from amazon. The anti-vax documentary callous disregard has also been taken off amazon. Various posts from the anti-vaxers have been deleted from various social media sites.
Though I don't believe the FDA should allow chelatiuon and other questionable treatments, and I don't believe vaccines cause autism for the most part, this censorship and its slippery slope does concern me.
On Twitter, I pondered how soon would this happen to me. Would Amazon purge my novel, the mu rhythm bluff from its site. Would Google delete this blog, as one ND proponent vowed he said he'd be able to accomplish. John Robison, asked me if I had any reason to believe that Amazon and/or Google had considered such action. I replied, seriously no, but with all the power he and other NDs had acquired, I did not know what the future bode for me.
Shortly afterwards, Facebook banned my blog.
So far, I have only had problems with Facebook and not with any other site or platform, but that could easily change, and as I said, I don't know what the future bodes for me and my crusade against this insidious movement that causes so much harm to autistics and their families and does no good.
On Twitter, I wondered what would happen if such censorship were directed at the neurodiversity movement. One of my followers gave a concise and what is probably the definitive answer: World War Three.
ADDENDUM: I reactivated my FB account and posted URL to my blog as a test, it seems the ban's
been lifted. But I'm still really pissed this happened and may deactivate the account again.
Tuesday, March 19, 2019
Is factitious syndrome a reason for some questionable autism diagnoses
Over the years, I've been skeptical of the autism diagnoses of a variety of people or groups of people. Those familiar with my work know about my article questioning the diagnosis of Bill Gates and the posthumous diagnoses of Albert Einstein and Thomas Jefferson. I've also questioned the claims of economist Vernon Smith who claimed to be autistic, but whose conclusions were based on a self-diagnosis obtained by taking a Simon Baron Cohen AQ quiz online.
I created a hornet's nest by wondering on what possible basis IACC members John Elder Robison and Samantha Crane merited a diagnosis, suggesting that they and other prospective members alleging an ASD should provide proof of a professionally obtained Dx.
It is not uncommon for individuals who are married, have children, never attended a special education school to have alleged to have received a diagnosis well into adulthood, despite the fact that some of them are fairly young (born after 1980) when autism was well known enough and a free diagnosis in their childhood due to provisions in the Individuals with Disabilities Education Act, allowing their school districts to pay for diagnostic testing if they felt they were autistic and needed special ed services.
Many of these are female neurodiversity proponents who claim that they fell through the cracks because the 6:1 or greater male to female ratio reported of higher functioning autistics is not really valid. They allege that autism is missing in women due to social camouflage based on some supposedly superior ability of women on the spectrum to disguise their autism and pass for normal people throughout their life. Or that they were diagnosed with something else or discriminated against because autism is seen as a boys' issue.
Other prominent people claiming to be autistic have been Craig Newmark and Braham Cohen. Ed Asner, father and grandfather of diagnosed individuals also stated he felt he was somewhere on the autism spectrum. Comedian Jerry Seinfeld also alleged he had an ASD then backtracked.
The latest big story about a new dx is chef Chris Fischer, husband of actress and comic Amy Schumer. The timing is interesting in that it happened just at the time a special about Ms. Schumer aired on Netflix. He apparently received a diagnosis of what would have been Asperger's before it was subsumed under a total ASD category well into adulthood and after he married the celebrity.
I pointed out on social media that if Ms. Schumer were single and a 'real' autistic potential suitor approached her, she would not walk, but run or at least not give him the time of day.
One person reprimanded me saying that I should not be claiming that Mr. Fischer's dx is invalid or a lie when I don't know what his life or circumstances were like. I pointed out, I never said his dx was invalid or a lie, but only that I was skeptical that it was a valid diagnosis.
/While it's true, I don't know all of Fischer's life or how he could merit a diagnosis of ASD, I do know he's a chef he was able to make a living without being repeatedly fired as I was, and was able to make friends with celebrities including Jake Gulluynhall and marry another one when I and most other autistic men are incels.
Of course, when I've expressed skepticism of someone else's autism it always came back to me. How can Jonathan Mitchell possibly have an autism diagnosis for blah blah reasons? For this reason, I published paperwork discussing my dx from Eric Courchesne's lab when I was a research subject for them. I invite anyone whose diagnosis I've expressed skepticism of to do the same.
Could there be a possible explanation for so many questionable diagnoses? Lately, there's been some discussion among people I've been following on twitter about an explanation that never occurred to me, but should have. That is factitious syndrome.
Factitious disorder is an interesting condition It is where people due to mental illness fake a condition or exaggerate certain diseases for attention or other reasons. At one time it was known as Munchausen's syndrome after the 18th century military man known for his tall tales.
One person who follows me and I them on twitter asked rhetorically why would anyone want to be autistic?
There could be a variety of reasons which could make it very appealing to someone with factitious disorder. Autism is repeatedly described as a gift, a superpower and another way of being. Shows like The Big Bang Theory and The Good Doctor also popularize this idea.
In less than a few years, the prevalence (at least according to the likely fictitious CDC ADDM statistics) has doubled or tripled. I'd be interesting in hearing about any medical condition whose prevalence has been alleged to have risen so fast for so many years according to an agency of the federal government.
All of these reasons could be quite appealing to someone with a profound mental illness that would lead them to have factitious or munchasen's syndrome.
I obviously can't prove who has or who hasn't have factitious syndrome to account for alleging to have autism, but I have little doubts that at least some people claiming to be autistic do so because of factitious disorder. This could possibly partially account for the explanation for so many high-functioning women claiming to be autistic who are members of the neurodiversity movement when the actual literature suggests their numbers are much lower.
This is something to ponder, I believe.
I created a hornet's nest by wondering on what possible basis IACC members John Elder Robison and Samantha Crane merited a diagnosis, suggesting that they and other prospective members alleging an ASD should provide proof of a professionally obtained Dx.
It is not uncommon for individuals who are married, have children, never attended a special education school to have alleged to have received a diagnosis well into adulthood, despite the fact that some of them are fairly young (born after 1980) when autism was well known enough and a free diagnosis in their childhood due to provisions in the Individuals with Disabilities Education Act, allowing their school districts to pay for diagnostic testing if they felt they were autistic and needed special ed services.
Many of these are female neurodiversity proponents who claim that they fell through the cracks because the 6:1 or greater male to female ratio reported of higher functioning autistics is not really valid. They allege that autism is missing in women due to social camouflage based on some supposedly superior ability of women on the spectrum to disguise their autism and pass for normal people throughout their life. Or that they were diagnosed with something else or discriminated against because autism is seen as a boys' issue.
Other prominent people claiming to be autistic have been Craig Newmark and Braham Cohen. Ed Asner, father and grandfather of diagnosed individuals also stated he felt he was somewhere on the autism spectrum. Comedian Jerry Seinfeld also alleged he had an ASD then backtracked.
The latest big story about a new dx is chef Chris Fischer, husband of actress and comic Amy Schumer. The timing is interesting in that it happened just at the time a special about Ms. Schumer aired on Netflix. He apparently received a diagnosis of what would have been Asperger's before it was subsumed under a total ASD category well into adulthood and after he married the celebrity.
I pointed out on social media that if Ms. Schumer were single and a 'real' autistic potential suitor approached her, she would not walk, but run or at least not give him the time of day.
One person reprimanded me saying that I should not be claiming that Mr. Fischer's dx is invalid or a lie when I don't know what his life or circumstances were like. I pointed out, I never said his dx was invalid or a lie, but only that I was skeptical that it was a valid diagnosis.
/While it's true, I don't know all of Fischer's life or how he could merit a diagnosis of ASD, I do know he's a chef he was able to make a living without being repeatedly fired as I was, and was able to make friends with celebrities including Jake Gulluynhall and marry another one when I and most other autistic men are incels.
Of course, when I've expressed skepticism of someone else's autism it always came back to me. How can Jonathan Mitchell possibly have an autism diagnosis for blah blah reasons? For this reason, I published paperwork discussing my dx from Eric Courchesne's lab when I was a research subject for them. I invite anyone whose diagnosis I've expressed skepticism of to do the same.
Could there be a possible explanation for so many questionable diagnoses? Lately, there's been some discussion among people I've been following on twitter about an explanation that never occurred to me, but should have. That is factitious syndrome.
Factitious disorder is an interesting condition It is where people due to mental illness fake a condition or exaggerate certain diseases for attention or other reasons. At one time it was known as Munchausen's syndrome after the 18th century military man known for his tall tales.
One person who follows me and I them on twitter asked rhetorically why would anyone want to be autistic?
There could be a variety of reasons which could make it very appealing to someone with factitious disorder. Autism is repeatedly described as a gift, a superpower and another way of being. Shows like The Big Bang Theory and The Good Doctor also popularize this idea.
In less than a few years, the prevalence (at least according to the likely fictitious CDC ADDM statistics) has doubled or tripled. I'd be interesting in hearing about any medical condition whose prevalence has been alleged to have risen so fast for so many years according to an agency of the federal government.
All of these reasons could be quite appealing to someone with a profound mental illness that would lead them to have factitious or munchasen's syndrome.
I obviously can't prove who has or who hasn't have factitious syndrome to account for alleging to have autism, but I have little doubts that at least some people claiming to be autistic do so because of factitious disorder. This could possibly partially account for the explanation for so many high-functioning women claiming to be autistic who are members of the neurodiversity movement when the actual literature suggests their numbers are much lower.
This is something to ponder, I believe.
Friday, February 22, 2019
Julia Bascom's Social Justice War against reported autism gender ratios
As people who've kept up with my most recent blog posts know, lately I've been writing about reported male to female ratios of autism and have given my somewhat limited take (due to lack of scientific training) on some of the reported studies on the matter. Those interested can check out a recent article I wrote on the subject published by Autism Parenting Magazine. Reported ratios were usually an average of four males for every female with some newer research suggesting the actual ratio might be closer to 3:1. In milder cases, the reported ratios have averaged about 6:1 or higher. In the more severe cases, reported ratios averaged about 2:1.
One explanation given for the discrepancies in ratios is that autism has been underestimated in higher-functioning females due to discrimination, the fact that autism presents differently in females than in males, social training girls receive as children that boys don't, and an interesting phenomenon called social camouflage, where women on the milder end of the spectrum are either more adept at disguising their autism than their male counterparts or more motivated for some reason that eludes me, or a combination of both. Before Autism Parenting published my article, I wrote a blog post about the subject.
This explanation is given by multiple neurodiversity proponents who are often extremely high-functioning females.
Among the largest body of scientific evidence showing boys are more susceptible to autism than girls is something called the female protective effect. This means that in order to become autistic, a girl must take a wider genetic hit to become autistic. Also differences in brain structure may account for a protective effect. Also mothers carry genes that make someone susceptible to autism and not become autistic themselves due to the protective effect. However, they often pass these genes onto their sons who become autistic. I reviewed some of the science behind this in the above-linked articles the interested reader can check out, so I won't do it again here. The evidence of a female protective effect has been widely replicated in a variety of studies and there is no question it exists.
One limitation of this science may be that it does not translate into what a precise ratio of autistic males to females would be. Theoretically the actual M:F ratio could be 2:1 or possibly lower even with a female protective effect. So the question is still open whether or not the 6:1 ratio in milder cases represents an underestimation of females.
One would think that female neurodiversity proponents who are so certain that social camouflage and other phenomena that keep women from getting a diagnosis would want to investigate the science behind it, write blog posts and essays explaining the protective effect and other scientific evidence that might dispute, but until recently (which I'll get to in a bit) there did not seem to be any interest in discussing the scientific evidence or lack of it. Instead, most female neurodiversity proponents state that autism is underestimated in women as fact. Apparently some of them don't even care about science or data.
The most prominent of these is Autistic Self Advocacy Network President Julia Bascom. She's written a rather interesting take on the subject.
Ms Bascom states:
Access to diagnosis, however, is still deeply inequitable. Autistic women and girls are diagnosed much less frequently than autistic boys, and we’re often diagnosed later in life, or after we’ve gone through a roulette-wheel of other labels
It would appear she's discounting the possibility that it's not inequitable, but rather there really are more boys who present with diagnostic symptoms of autism than girls and some of the other labels may have actually been more accurate in the first place.
According to Bascom, racism plays a role in this and fosters an argument for social justice:
We still see significant underdiagnosis in communities of color, and we still have yet to truthfully confront the role racism plays in that.
Ms Bascom goes on to state:
and the end result is that all across the globe, autistic women and girls are missed, overlooked, and ignored.
She neglects to provide any evidence for this hypothesis. Science aside, what of all the high profile autistic women such as Temple Grandin, Donna Williams, Carly Fleischman, and most recently newly minted lawyer Haley Moss, and all the media exposure they've received? if even a 3:1 M:F ratio is true, female spectrumites, if anything, have received disproportionately high amounts of attention.
Bascom goes even further in her apparent social justice war against reported gender ratios:
Instead of resting easily on statistics which claim only one autistic woman exists for every 2, 4, or 9 autistic men, we should be working relentlessly to close those gaps and make sure that everyone who needs a diagnosis is connected to equitable support. Then we can have a count, I suppose, if we still think we need one. My concern here isn’t really about data. It’s about justice.
So here we have a tacit admission on Bascom's part that scientific data does not matter. Girls are often undiagnosed, so we must start a social justice war so these individuals can get the diagnosis they covet.
One possible flaw in Bascom's argument can be summed up in what she concedes is a frequent characteristic of many diagnosed females:
One of the most common ways for autistic women to get diagnosed, in fact, is after we bring our own children in for assessment.
Even though the DSM specifies that difficulties in reciprocal social relationships are part of the diagnostic criteria, women high functioning enough to have significant others and have children who are autistic, whom they've brought for assessment are among the most commonly diagnosed females on the spectrum. Why they would have been diagnosed with other labels, why their parents would not have brought them to the attention of a clinician in the first place are points to ponder.
Clearly, Bascom is more interested in social justice, having women "doctor shop" for a diagnosis, and possibly forcing clinicians to diagnose females who may not be on the spectrum than in actual data, It does not matter what the science says It does not matter what the established criteria of an autism dx is. It must be changed for women in order to promote social justice for women who need a diagnosis. Why would these women who can care for children need a diagnosis in the first place? Could it be this is the only way they can legitimize their crusade in favor of neurodiversity?
Only recently have Bascom and other female NDs shown a remote interest in establishing a scientific basis for their theories. Bascom was one of the co-authors of researcher Allison Ratto who did a study involving male and female autistics and a possible camouflage effect. They also appeared together on a recent Cspan show discussing these issues.
On watching this video, I was intrigued when I got to around the 22 minute 48 second part, where Julia Bascom is asked when she was diagnosed as autistic and was quite reticent, responding, "I don't talk about my life history on TV." This makes me wonder about Bascom's diagnosis. Was she self-diagnosed? Did she go to multiple clinicians before she got a diagnosis? Apparently, according to her own social justice theories, she would certainly do this to get an autism diagnosis. Did she bully some clinicians into diagnosing her somehow? Based on what she's written before, these are all interesting points to ponder.
A social justice crusade may result in more females being diagnosed under questionable circumstances, but it won't change the science of the female protective effect and other evidence that an at least 3:1 ratio of autistic males to females may be real. I feel that if neurodiversity proponents are going to allege that autism is definitely overlooked and underestimated in females they should provide scientific evidence of that fact rather than starting a social justice war to promote their position.
One explanation given for the discrepancies in ratios is that autism has been underestimated in higher-functioning females due to discrimination, the fact that autism presents differently in females than in males, social training girls receive as children that boys don't, and an interesting phenomenon called social camouflage, where women on the milder end of the spectrum are either more adept at disguising their autism than their male counterparts or more motivated for some reason that eludes me, or a combination of both. Before Autism Parenting published my article, I wrote a blog post about the subject.
This explanation is given by multiple neurodiversity proponents who are often extremely high-functioning females.
Among the largest body of scientific evidence showing boys are more susceptible to autism than girls is something called the female protective effect. This means that in order to become autistic, a girl must take a wider genetic hit to become autistic. Also differences in brain structure may account for a protective effect. Also mothers carry genes that make someone susceptible to autism and not become autistic themselves due to the protective effect. However, they often pass these genes onto their sons who become autistic. I reviewed some of the science behind this in the above-linked articles the interested reader can check out, so I won't do it again here. The evidence of a female protective effect has been widely replicated in a variety of studies and there is no question it exists.
One limitation of this science may be that it does not translate into what a precise ratio of autistic males to females would be. Theoretically the actual M:F ratio could be 2:1 or possibly lower even with a female protective effect. So the question is still open whether or not the 6:1 ratio in milder cases represents an underestimation of females.
One would think that female neurodiversity proponents who are so certain that social camouflage and other phenomena that keep women from getting a diagnosis would want to investigate the science behind it, write blog posts and essays explaining the protective effect and other scientific evidence that might dispute, but until recently (which I'll get to in a bit) there did not seem to be any interest in discussing the scientific evidence or lack of it. Instead, most female neurodiversity proponents state that autism is underestimated in women as fact. Apparently some of them don't even care about science or data.
The most prominent of these is Autistic Self Advocacy Network President Julia Bascom. She's written a rather interesting take on the subject.
Ms Bascom states:
Access to diagnosis, however, is still deeply inequitable. Autistic women and girls are diagnosed much less frequently than autistic boys, and we’re often diagnosed later in life, or after we’ve gone through a roulette-wheel of other labels
It would appear she's discounting the possibility that it's not inequitable, but rather there really are more boys who present with diagnostic symptoms of autism than girls and some of the other labels may have actually been more accurate in the first place.
According to Bascom, racism plays a role in this and fosters an argument for social justice:
We still see significant underdiagnosis in communities of color, and we still have yet to truthfully confront the role racism plays in that.
Ms Bascom goes on to state:
and the end result is that all across the globe, autistic women and girls are missed, overlooked, and ignored.
She neglects to provide any evidence for this hypothesis. Science aside, what of all the high profile autistic women such as Temple Grandin, Donna Williams, Carly Fleischman, and most recently newly minted lawyer Haley Moss, and all the media exposure they've received? if even a 3:1 M:F ratio is true, female spectrumites, if anything, have received disproportionately high amounts of attention.
Bascom goes even further in her apparent social justice war against reported gender ratios:
Instead of resting easily on statistics which claim only one autistic woman exists for every 2, 4, or 9 autistic men, we should be working relentlessly to close those gaps and make sure that everyone who needs a diagnosis is connected to equitable support. Then we can have a count, I suppose, if we still think we need one. My concern here isn’t really about data. It’s about justice.
So here we have a tacit admission on Bascom's part that scientific data does not matter. Girls are often undiagnosed, so we must start a social justice war so these individuals can get the diagnosis they covet.
One possible flaw in Bascom's argument can be summed up in what she concedes is a frequent characteristic of many diagnosed females:
One of the most common ways for autistic women to get diagnosed, in fact, is after we bring our own children in for assessment.
Even though the DSM specifies that difficulties in reciprocal social relationships are part of the diagnostic criteria, women high functioning enough to have significant others and have children who are autistic, whom they've brought for assessment are among the most commonly diagnosed females on the spectrum. Why they would have been diagnosed with other labels, why their parents would not have brought them to the attention of a clinician in the first place are points to ponder.
Clearly, Bascom is more interested in social justice, having women "doctor shop" for a diagnosis, and possibly forcing clinicians to diagnose females who may not be on the spectrum than in actual data, It does not matter what the science says It does not matter what the established criteria of an autism dx is. It must be changed for women in order to promote social justice for women who need a diagnosis. Why would these women who can care for children need a diagnosis in the first place? Could it be this is the only way they can legitimize their crusade in favor of neurodiversity?
Only recently have Bascom and other female NDs shown a remote interest in establishing a scientific basis for their theories. Bascom was one of the co-authors of researcher Allison Ratto who did a study involving male and female autistics and a possible camouflage effect. They also appeared together on a recent Cspan show discussing these issues.
On watching this video, I was intrigued when I got to around the 22 minute 48 second part, where Julia Bascom is asked when she was diagnosed as autistic and was quite reticent, responding, "I don't talk about my life history on TV." This makes me wonder about Bascom's diagnosis. Was she self-diagnosed? Did she go to multiple clinicians before she got a diagnosis? Apparently, according to her own social justice theories, she would certainly do this to get an autism diagnosis. Did she bully some clinicians into diagnosing her somehow? Based on what she's written before, these are all interesting points to ponder.
A social justice crusade may result in more females being diagnosed under questionable circumstances, but it won't change the science of the female protective effect and other evidence that an at least 3:1 ratio of autistic males to females may be real. I feel that if neurodiversity proponents are going to allege that autism is definitely overlooked and underestimated in females they should provide scientific evidence of that fact rather than starting a social justice war to promote their position.
Thursday, February 14, 2019
My Autism Parenting Magazine article on male/female sex ratios in autism
About nine months ago, I posted a piece on this blog in which I discussed the issues of whether or not male to female sex ratios were underestimated in autism. I also discussed the phenomenon of "social camouflage" which suggests that many female autistics go under the radar due to an ability to mask their symptoms to adapt socially. This has become a fashionable trope of numerous female neurodiversity proponents. I stated that there was more info that I had, but would not publish it in that particular piece because I had submitted an article about it and hoped to get it published in a magazine.
Well, it happened. Autism Parenting Magazine published my piece. When it got published, a number of people on Facebook and other places were interested in reading it. Unfortunately it was behind a paywall and the magazine asked me not to release it to the general public.
However, the magazine a little while ago published my article as a blogpost That is the news for anyone who might be interested in reading this article. It discusses a variety of issues on why I believe that there is no scientific evidence for the neurodiversity movement's claim that autism has been underestimated in women. For those who may be interested in this subject, I hope you will read my article and enjoy it. For those in the ND movement who disagree with me, I hope you'll read it and think twice about alleging that autism ratios have been underestimated in women as fact.
Well, it happened. Autism Parenting Magazine published my piece. When it got published, a number of people on Facebook and other places were interested in reading it. Unfortunately it was behind a paywall and the magazine asked me not to release it to the general public.
However, the magazine a little while ago published my article as a blogpost That is the news for anyone who might be interested in reading this article. It discusses a variety of issues on why I believe that there is no scientific evidence for the neurodiversity movement's claim that autism has been underestimated in women. For those who may be interested in this subject, I hope you will read my article and enjoy it. For those in the ND movement who disagree with me, I hope you'll read it and think twice about alleging that autism ratios have been underestimated in women as fact.
Thursday, January 31, 2019
How can ASAN manage autism public policy when they can't manage themselves?
In the late 1930's, as baseball legend Babe Ruth's career as a player was winding down, he expressed a desire to manage the New York Yankees. The team's owner Jacob Rupert replied to the carousing and heavy drinking Ruth, "how can you manage a baseball team when you can't manage yourself?"
This statement rings true for the premiere neurodiversity organization The Autistic Self Advocacy Network as as can be seen in their latest publicly available 2017 990 form spent more than $175,000 than the revenue they took in that year.
In previous blog posts, Ive written that despite the fact Ari Ne'eman, their former CEO, repeatedly criticized the high salaries of the top executives at Autism Speaks, he more than doubled his own salary in a four year period from $40,000 a year to nearly $90,000 a year. His salary increase from 2011 to 2012 of $40,000 to $65,000, a nearly 62% annual increase was nearly double the increase of the organization's revenue.
Because of the organization's deficit spending, it appears they have begun to economize by paying their new CEO Julia Bascom a salary of slightly less than $70,000, a substantial decrease from Ari Ne'eman's 2015 salary of nearly $90,000 a year.
As can also be seen on the form, their net assets decreased from nearly $350,000 at the beginning of 2017 to just over $170,000 at the end of the year, or a slightly lower amount than the red ink they produced in 2017. If their expenses versus revenue in 2018 was comparable to the previous year, they have no assets left, but owe some creditors money.
Is this an organization you'd trust to manage your business, financial affairs, public policy recommendations, etc? A common sense answer would certainly be no. However, if you're a prominent candidate for President of the United States or the federal government the answer which defies rationality is yes. When Jeb Bush ran for president in 2016, he consulted this organization. When Hillary Clinton became the democratic party's nominee in the same year, she also consulted this organization for policy advice and recommendations. As I've written in a previous blog post Ms. Clinton made a variety of dubious autism policy recommendations after winning the democratic party's nomination in 2016. These autism talking points were largely based on a conference call she had with ASAN.
I've also written on occasion that the Interagency Autism Coordinating Committee has appointed several neurodiversity, anti treatment breakthrough autistics to make policy recommendations to the federal government while appointing zero pro-treatment anti-neurodiversity autistics, despite the fact that two of them expressed a desire to serve and were turned down. Three of them, Ari Ne'eman, Scott Robertson, and Samantha Crane have had prominent posts within the Autistic Self-Advocacy Network.
ASAN's current autistic representative Samantha Crane, has stated the wandering behaviors of severely autistic children, often resulting in death from accidental drownings and other reasons,are merely problematized by other people, yet are perfectly reasonable. Their current president Julia Bascom apparently believes the reason severely intellectually disabled autistic persons can't write a blog post as well as she can is that they had bad parents who sheltered and infantalized them. Amy Lutz, the mother of a severely autistic individual with a tested IQ of 40 has invited Ms. Bascom to come to her home and teach her son how to write a blog post. So far, Bascom has not accepted.
These are people whom I neither would want to manage my business, finances, or autism policy, though I know those in power disagree.
But will ASAN go bankrupt in a year or two? Is all hope lost for this organization which repeatedly engages in deficit spending? Not necessarily. As can also seen in their 2017 form they have a benefactor with deep pockets. The Foundation for an Open Society donated $180,000 to them in 2017. Though I have not linked to their 2016 form, anyone who cares to peruse it will see they donated $130,000 to them in that year. This is an organization started by well-known billionaire George Soros. Perhaps Mr. Soros will bail them out. The fact that a powerful billionaire supports this philosophy may be the reason the ND movement has made such significant strides in obtaining power within the government as well as private sector organizations such as autism speaks. This does not bode well for those of us who are part of the #autisticdarkweb. Not to mention the fact that there are about 20 of us and maybe 5,000 of them. But the #theautisticdarkweb will continue crusading against this movement we detest so much.
I don't know if ASAN will spend themselves out of existence, but just in case, I hope that Sam Crane had a good bankruptcy course when she attended Harvard Law School. I suspect ASAN may need her to do some pro bono work in that regard.
This statement rings true for the premiere neurodiversity organization The Autistic Self Advocacy Network as as can be seen in their latest publicly available 2017 990 form spent more than $175,000 than the revenue they took in that year.
In previous blog posts, Ive written that despite the fact Ari Ne'eman, their former CEO, repeatedly criticized the high salaries of the top executives at Autism Speaks, he more than doubled his own salary in a four year period from $40,000 a year to nearly $90,000 a year. His salary increase from 2011 to 2012 of $40,000 to $65,000, a nearly 62% annual increase was nearly double the increase of the organization's revenue.
Because of the organization's deficit spending, it appears they have begun to economize by paying their new CEO Julia Bascom a salary of slightly less than $70,000, a substantial decrease from Ari Ne'eman's 2015 salary of nearly $90,000 a year.
As can also be seen on the form, their net assets decreased from nearly $350,000 at the beginning of 2017 to just over $170,000 at the end of the year, or a slightly lower amount than the red ink they produced in 2017. If their expenses versus revenue in 2018 was comparable to the previous year, they have no assets left, but owe some creditors money.
Is this an organization you'd trust to manage your business, financial affairs, public policy recommendations, etc? A common sense answer would certainly be no. However, if you're a prominent candidate for President of the United States or the federal government the answer which defies rationality is yes. When Jeb Bush ran for president in 2016, he consulted this organization. When Hillary Clinton became the democratic party's nominee in the same year, she also consulted this organization for policy advice and recommendations. As I've written in a previous blog post Ms. Clinton made a variety of dubious autism policy recommendations after winning the democratic party's nomination in 2016. These autism talking points were largely based on a conference call she had with ASAN.
I've also written on occasion that the Interagency Autism Coordinating Committee has appointed several neurodiversity, anti treatment breakthrough autistics to make policy recommendations to the federal government while appointing zero pro-treatment anti-neurodiversity autistics, despite the fact that two of them expressed a desire to serve and were turned down. Three of them, Ari Ne'eman, Scott Robertson, and Samantha Crane have had prominent posts within the Autistic Self-Advocacy Network.
ASAN's current autistic representative Samantha Crane, has stated the wandering behaviors of severely autistic children, often resulting in death from accidental drownings and other reasons,are merely problematized by other people, yet are perfectly reasonable. Their current president Julia Bascom apparently believes the reason severely intellectually disabled autistic persons can't write a blog post as well as she can is that they had bad parents who sheltered and infantalized them. Amy Lutz, the mother of a severely autistic individual with a tested IQ of 40 has invited Ms. Bascom to come to her home and teach her son how to write a blog post. So far, Bascom has not accepted.
These are people whom I neither would want to manage my business, finances, or autism policy, though I know those in power disagree.
But will ASAN go bankrupt in a year or two? Is all hope lost for this organization which repeatedly engages in deficit spending? Not necessarily. As can also seen in their 2017 form they have a benefactor with deep pockets. The Foundation for an Open Society donated $180,000 to them in 2017. Though I have not linked to their 2016 form, anyone who cares to peruse it will see they donated $130,000 to them in that year. This is an organization started by well-known billionaire George Soros. Perhaps Mr. Soros will bail them out. The fact that a powerful billionaire supports this philosophy may be the reason the ND movement has made such significant strides in obtaining power within the government as well as private sector organizations such as autism speaks. This does not bode well for those of us who are part of the #autisticdarkweb. Not to mention the fact that there are about 20 of us and maybe 5,000 of them. But the #theautisticdarkweb will continue crusading against this movement we detest so much.
I don't know if ASAN will spend themselves out of existence, but just in case, I hope that Sam Crane had a good bankruptcy course when she attended Harvard Law School. I suspect ASAN may need her to do some pro bono work in that regard.
Saturday, January 19, 2019
Gadfly published in spectator, a few NDs, including Silberman, mock his disability
In the I've got some good news and bad news to report department, I have, first, some of the best news I've had in a while.
I've been published in Spectator Magazine in the UK. I wrote a short piece discussing the problems with the neurodiversity movement that I've linked to. This is a prestigious magazine and will hopefully help get the word out about some of the problems with the ND movement. It took them six months, but they finally published it.
Along with good news, there is also some bad news to report. My article did not sit well with some of the NDs as can be expected. Some of them have claimed that everything I wrote about ND was wrong and that my article was poorly researched. A few of them have stooped to apparently ridiculing my disability as demonstrated in the following screen shot taken from twitter:
It started with a vague comment I don't understand that neurodiversity proponent Sarah Kurchak made about my article which is not included in the screenshot:
An individual who calls himself autvntg joined in the fun and stated that I have an obsession about fucking and my only bitch about autism was that it was stopping me from being laid.
Even more interesting, famed journalist and best selling author of neurotribes Steve Silberman apparently wrote on twitter that autvntg was absolutely right. Such cruelty among neurodiversity proponents is nothing new. I did not think Silberman could go any lower than he did when he justified the analogy between autism speaks and nazis and eugenics but I suppose nothing about this man should surprise me anymore.
Since Silberman has blocked me on Twitter, I was not aware that he had even responded to Autvng's comment in this matter, until one of my followers brought this to my attention and showed me this screenshot. Since Silberman blocked me, I was not able to embed the actual tweet but only this screenshot. I don't think I can go into Silberman's account and verify that this is real, but I think it's unlikely it's a forgery.
Autvntg and Silberman have apparently not spent much time reading my blog where I talk about my fine motor coordination problems, inability to hold down a job, inability to get things done during the day and stop twiddling (self-stimulation) and the variety of other issues I've written about that have affected me besides celibacy which I do blame on autism.
As some who have followed me over the years know, on occasion, I've responded in an angry fashion when various members of the ND movement cussed at me, insulted my parents and ridiculed my disability. I regret that now and hope from now on I can have a "just the facts ma'am" way of doing things and just report it on this blog or social media, rather than responding in a nasty way. It's not fun to see cruel comments written about me just because I hate this disability and wish there were legitimate treatments and a cure. However, I can take solace in the fact that if I elicited this type of response from Saint Silberman, I must be making an impact.
Along with good news, there is also some bad news to report. My article did not sit well with some of the NDs as can be expected. Some of them have claimed that everything I wrote about ND was wrong and that my article was poorly researched. A few of them have stooped to apparently ridiculing my disability as demonstrated in the following screen shot taken from twitter:
I know I'm supposed to ignore these types, but come on. Someone got paid to basically write "the neurodiversity movement has too many women in it... and also I have suspicions that they might fuck." I can't just leave that alone.
An individual who calls himself autvntg joined in the fun and stated that I have an obsession about fucking and my only bitch about autism was that it was stopping me from being laid.
Even more interesting, famed journalist and best selling author of neurotribes Steve Silberman apparently wrote on twitter that autvntg was absolutely right. Such cruelty among neurodiversity proponents is nothing new. I did not think Silberman could go any lower than he did when he justified the analogy between autism speaks and nazis and eugenics but I suppose nothing about this man should surprise me anymore.
Since Silberman has blocked me on Twitter, I was not aware that he had even responded to Autvng's comment in this matter, until one of my followers brought this to my attention and showed me this screenshot. Since Silberman blocked me, I was not able to embed the actual tweet but only this screenshot. I don't think I can go into Silberman's account and verify that this is real, but I think it's unlikely it's a forgery.
Autvntg and Silberman have apparently not spent much time reading my blog where I talk about my fine motor coordination problems, inability to hold down a job, inability to get things done during the day and stop twiddling (self-stimulation) and the variety of other issues I've written about that have affected me besides celibacy which I do blame on autism.
As some who have followed me over the years know, on occasion, I've responded in an angry fashion when various members of the ND movement cussed at me, insulted my parents and ridiculed my disability. I regret that now and hope from now on I can have a "just the facts ma'am" way of doing things and just report it on this blog or social media, rather than responding in a nasty way. It's not fun to see cruel comments written about me just because I hate this disability and wish there were legitimate treatments and a cure. However, I can take solace in the fact that if I elicited this type of response from Saint Silberman, I must be making an impact.
Tuesday, January 8, 2019
Finished first draft of "the mu rhythm bluff" screenplay. Now what?
As some people know, nearly six years ago, I wrote and published a novel, "The mu rhythm bluff" about an autistic man who undergoes an experimental treatment to help his autism, but instead it turns him into an expert poker player. I dreamed of it being a commercial success and being made into a movie, an accomplishment that happens with very few novels.
Getting it published by a commercial house was too difficult, so I decided to take the easy route that has become available in the 21st century, self-publishing it on Amazon. It basically went nowhere and I probably sold not much more than 200 copies.
Shortly after I published it, the daughter of a friend of my mom's who worked for the film maker Virgin Produced found the plot of my novel compelling. She asked me if the rights were available and if I could send her a .pdf copy which she would pass around to her colleagues. I happily obliged. She wrote me an email saying 'thank you' and that was the last I heard from her. What would have been a coup for a mediocre self-published novel did not come to fruition.
I would still be interested in having it made into a movie, so I decided to take a break from some other projects still on the burner and write a screenplay version of it. I have now done that. Though it is probably too long and I've written enough material for a two and a half hour movie, so it likely needs significant condensing and reworking. A screenplay is supposed to be about 120 pages in the correct format, which comes out to approximately a two hour movie. (A page equals a minute of film time). With a length of more than 150 pages it is likely too long.
I'm not even sure I got the format right, but I did my best. I've heard about software you can buy that does formatting for you, and there's a good chance I will get it. Next step is to have it printed out so I can have a hard copy.
Self-publishing a book is one thing, but it is probably not feasible for most people to invest in the capital to make it into a movie. If I ever reach the step where it's ready for submission anywhere, I will certainly have an uphill battle getting it onto the big screen. Also, I'm not sure how much I like the title "the mu rhythm bluff". I'd like to call it something else, but I'm dumbstruck as far as thinking of a title is concerned. I'm not sure how marketable a story about poker would be to the big screen. There have been some poker movies, but I think most of them were low budget and did not do well. Rounders with Matt Damon was one that saw the light of day, but was not exactly a box office success. At the time though, No limit Hold 'Em was not as popular as it is now.
After I'd written four novels without success, I decided to try something new. Anyone who has spent any minimal amount of time reading this blog knows that it's mostly devoted to scathing criticism of the neurodiversity movement which I detest. Therefore, I decided I'd write a non-fiction book refuting the tenets of neurodiversity.
I thought it might be easier than fiction, because it did not require the imagination to think of certain things, and I already had a fair amount of material I could recycle from blog posts and other writings. However, I was certainly wrong. My disability made it hard for me to concentrate and apply myself as it always does. The book required an inordinate amount of research and I spent over three years writing it and reading various articles to do the best research to dispute this philosophy. It was made harder by the fact that in the last few years, more and more has been happening in the neurodiversity world and I had to update the manuscript at various points and there are new things that have happened since that I have not included in the book, Baron-Cohen's remarks about comparing pro-cure people to nazis and Klansmen the most prominent.
However, I managed to write a first draft, which I spent time revising and reworking. I had a manuscript, but the question then as I pose it now was 'now what'. It was likely not ready for submission and I did not want to spend $3,000 on an editor I could not afford who might not even be helpful, let alone greatly increasing the chances of having it published anywhere. I did, however, send it along to a few agents who turned it down. I decided to send it to Jessica Kingsley, which admittedly might not be the best fit for an anti-ND book. Not surprisingly, they turned it down.
After this, I decided to take a break from the nonfiction book and write a screenplay version of my self-published novel. Again, I thought this would be an easier project than my last two. After all, I already had the story written out in prose form and a screenplay is less labor intense than a book length manuscript. For the second time, I was dead wrong. I had no familiarity with screenplay format and had to learn from a book and reading examples of screenplays which were made into films that saw the light of day. Also, condensing a 91,000 word novel into an approximately 120 page screenplay format which would be less than a third of the length of the novel. I struggled with this for a time because of my disability, but have finally managed to write a first draft.
I guess the lesson learned in all this is that nothing good comes easily.
So, again, the question is 'now what?' I will continue working on this project, but maybe try to devote time to other endeavors, but I'm not sure how far I will go with it. I realize it is unlikely it will ever be made into a movie, but I can dream can't I?
I may or may not keep readers updated about more work on this screenplay in progress. However, just in case, stay tuned.
Getting it published by a commercial house was too difficult, so I decided to take the easy route that has become available in the 21st century, self-publishing it on Amazon. It basically went nowhere and I probably sold not much more than 200 copies.
Shortly after I published it, the daughter of a friend of my mom's who worked for the film maker Virgin Produced found the plot of my novel compelling. She asked me if the rights were available and if I could send her a .pdf copy which she would pass around to her colleagues. I happily obliged. She wrote me an email saying 'thank you' and that was the last I heard from her. What would have been a coup for a mediocre self-published novel did not come to fruition.
I would still be interested in having it made into a movie, so I decided to take a break from some other projects still on the burner and write a screenplay version of it. I have now done that. Though it is probably too long and I've written enough material for a two and a half hour movie, so it likely needs significant condensing and reworking. A screenplay is supposed to be about 120 pages in the correct format, which comes out to approximately a two hour movie. (A page equals a minute of film time). With a length of more than 150 pages it is likely too long.
I'm not even sure I got the format right, but I did my best. I've heard about software you can buy that does formatting for you, and there's a good chance I will get it. Next step is to have it printed out so I can have a hard copy.
Self-publishing a book is one thing, but it is probably not feasible for most people to invest in the capital to make it into a movie. If I ever reach the step where it's ready for submission anywhere, I will certainly have an uphill battle getting it onto the big screen. Also, I'm not sure how much I like the title "the mu rhythm bluff". I'd like to call it something else, but I'm dumbstruck as far as thinking of a title is concerned. I'm not sure how marketable a story about poker would be to the big screen. There have been some poker movies, but I think most of them were low budget and did not do well. Rounders with Matt Damon was one that saw the light of day, but was not exactly a box office success. At the time though, No limit Hold 'Em was not as popular as it is now.
After I'd written four novels without success, I decided to try something new. Anyone who has spent any minimal amount of time reading this blog knows that it's mostly devoted to scathing criticism of the neurodiversity movement which I detest. Therefore, I decided I'd write a non-fiction book refuting the tenets of neurodiversity.
I thought it might be easier than fiction, because it did not require the imagination to think of certain things, and I already had a fair amount of material I could recycle from blog posts and other writings. However, I was certainly wrong. My disability made it hard for me to concentrate and apply myself as it always does. The book required an inordinate amount of research and I spent over three years writing it and reading various articles to do the best research to dispute this philosophy. It was made harder by the fact that in the last few years, more and more has been happening in the neurodiversity world and I had to update the manuscript at various points and there are new things that have happened since that I have not included in the book, Baron-Cohen's remarks about comparing pro-cure people to nazis and Klansmen the most prominent.
However, I managed to write a first draft, which I spent time revising and reworking. I had a manuscript, but the question then as I pose it now was 'now what'. It was likely not ready for submission and I did not want to spend $3,000 on an editor I could not afford who might not even be helpful, let alone greatly increasing the chances of having it published anywhere. I did, however, send it along to a few agents who turned it down. I decided to send it to Jessica Kingsley, which admittedly might not be the best fit for an anti-ND book. Not surprisingly, they turned it down.
After this, I decided to take a break from the nonfiction book and write a screenplay version of my self-published novel. Again, I thought this would be an easier project than my last two. After all, I already had the story written out in prose form and a screenplay is less labor intense than a book length manuscript. For the second time, I was dead wrong. I had no familiarity with screenplay format and had to learn from a book and reading examples of screenplays which were made into films that saw the light of day. Also, condensing a 91,000 word novel into an approximately 120 page screenplay format which would be less than a third of the length of the novel. I struggled with this for a time because of my disability, but have finally managed to write a first draft.
I guess the lesson learned in all this is that nothing good comes easily.
So, again, the question is 'now what?' I will continue working on this project, but maybe try to devote time to other endeavors, but I'm not sure how far I will go with it. I realize it is unlikely it will ever be made into a movie, but I can dream can't I?
I may or may not keep readers updated about more work on this screenplay in progress. However, just in case, stay tuned.
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