tag:blogger.com,1999:blog-83534429830521458512024-03-14T18:26:21.312-07:00autism's gadflyWe don't need no stinkin' neurodiversityjonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.comBlogger493125tag:blogger.com,1999:blog-8353442983052145851.post-40999542237367922982020-07-29T11:58:00.003-07:002020-07-29T11:58:25.922-07:00A reading of "The Mu Rhythm Bluff" As many of those who have followed me over the years know, about seven years ago, I self-published a novel "The Mu Rhythm Bluff" on Amazon. I hoped I could use my autism as a gimmick to promote it. However, you know what they say about the best laid plans of mice and men. It basically went nowhere and it sold about 250 copies, though seven years later, I still sell some copies from time to time. <br />
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Not only did the gimmick not work the way I wanted it to, but now autistic novelists may soon be a dime a dozen. Madeleine Ryan, the Australian writer who recently published an article in the New York Times telling parents that their autistic child is perfect has a novel published by a major house that will be released next month. Helen Hoang who is married with children and diagnosed with autism at age 34 has stated that her autism is so mild that it does not even feel like a disability. Her novels have been commercially successful and for a brief time one of her novels was in the top 100 in Amazon's kindle store. <br />
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I gave up on trying to promote it a while ago, but I suppose most novels (even those published by a major house) have a shelf life of less than seven years. <br />
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I recently purchased a web cam and have been making some videos to test it out. Just now I made one of my reading from the beginning of "The Mu Rhythm Bluff". If anyone is interested in purchasing the novel, either kindle or paperback, the link to do so is at the top of my blog, featuring the artwork of my talented cover artist Liz Ingersoll. I've decided to post the video in this blog enjoy:<br />
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<iframe allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="285" src="https://www.youtube.com/embed/PGdH-NtZfk8" width="507"></iframe><br />jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com15tag:blogger.com,1999:blog-8353442983052145851.post-3077057367979838032020-05-14T12:10:00.000-07:002020-05-21T06:42:56.001-07:00Spectrum's Incel article and comments from "sex therapist" Amy Gravino and neurodiversity proponent Sara Luterman <br />
A new <a href="https://www.spectrumnews.org/features/deep-dive/radical-online-communities-and-their-toxic-allure-for-autistic-men/">article</a> in Spectrum magazine on Incels has been recently gaining traction. For those who don't know, Incel is a contraction for the words involuntary celibate or people (usually men) who can't find a sexual partner who want one. The old saw misery loves company rings true here in that there have been a variety of forums on Reddit and other places where these men have been able to hook up and commiserate.<br />
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There has been some controversy in this movement in that a small percentage of them have engaged in nasty misogynistic rants against women. Some of them have even threatened outright violence. A very few of them have even committed murder. The most well-known example of this is Elliot Rodger, "the virgin killer". He's an individual whose mother labeled him a high functioning autistic in divorce papers. Frustrated at not being able to find a girlfriend or even knowing how to ask a woman for a date, he went on a killing spree, murdering several women. Alek Minassian, another individual, praised Rodger and then ran over some persons with a van, frustrated at not being able to have sex.<br />
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Because of these outliers, there has been a tendency to paint autistic men who can't find girlfriends with a broad brush and label us as "entitled" "stalkers" or bad people.<br />
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The problems of involuntary celibacy are very real for many autistic men. The vast majority are not violent or misogynists who have a feeling of "entitlement". We just want to have normal heterosexual relationships the way non-handicapped men do. It is wrong to label us all this way and it does not help the situation.<br />
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But what if one of the people is someone who is a counselor who wants to give autistic individuals (as far as I know only men and no women) advice about sex and labels themselves "The Dr. Ruth of autism" An individual named Amy Gravino has done this. <samp class="EmbedCode-container"><code class="EmbedCode-code"></code></samp><br />
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<code class="EmbedCode-code">Given my line of
work, I have a great deal of empathy for individuals on the spectrum
struggling to find and maintain relationships. Yet the harassment I and
other autistic women have experienced with 'incels' has
no parallel, and deserves no empathy... <a href="https://t.co/4ctpKQ4y6j">https://t.co/4ctpKQ4y6j</a></code></div>
<code class="EmbedCode-code">—
Amy Gravino (@AmyGravino) <a href="https://twitter.com/AmyGravino/status/1260625095170588674?ref_src=twsrc%5Etfw">May
13, 2020</a></code></blockquote>
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<script async="" charset="utf-8" src="https://platform.twitter.com/widgets.js"></script> </code><span style="opacity: 0; position: absolute; white-space: pre-wrap;">tter.com/AmyGravino/status/1260630266210668545?s=20</span><br />
<span style="opacity: 0; position: absolute; white-space: pre-wrap;"> </span><span style="opacity: 0; position: absolute; white-space: pre-wrap;">:https://twitter.com/AmyGravino/status/1260630266210668545?s=20</span><br />
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<span style="opacity: 0; position: absolute; white-space: pre-wrap;">https://twitter.com/AmyGravino/status/1260630266210668545?s=20</span>
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Autism often becomes a shield that these men hide behind. It is deliberate, it is calculated, and it does not warrant a sympathetic portrayal. Autistic women have and do face as much rejection as autistic men, yet we aren't the ones making violent threats against others...</div>
— Amy Gravino (@AmyGravino) <a href="https://twitter.com/AmyGravino/status/1260625691760103425?ref_src=twsrc%5Etfw">May 13, 2020</a></blockquote>
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All of this stems from a culture that is rooted in the belief that men are entitled to have a relationship or sex with women. We need to teach healthy attitudes toward sex and relationships and do everything possible not to leave autistic men vulnerable to these incel sites...</div>
— Amy Gravino (@AmyGravino) <a href="https://twitter.com/AmyGravino/status/1260626897999970306?ref_src=twsrc%5Etfw">May 13, 2020</a></blockquote>
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I have faced sadness, heartache, rejection, and everything else in a country song. The difference is that while everything I do is to prevent others from experiencing the pain I have gone through, these incels want everyone to feel as miserable as they do. And that is not okay.</div>
— Amy Gravino (@AmyGravino) <a href="https://twitter.com/AmyGravino/status/1260630266210668545?ref_src=twsrc%5Etfw">May 13, 2020</a></blockquote>
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These are strange words from someone who claims they are a sex advisor like Dr. Ruth and states they want to help autistic men find dates and make a living from it. <br />
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I not only believe these comments are not helpful, but they are sexist and ableist bigotry. <br />
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Ms. Gravino obtained a masters degree in Applied Behavior Analysis from a lower tier college. Afterwards, she became a "certified autism specialist" from some diploma mill. She has a job at Rutgers University in New Jersey where she plies her trade without any type of state clinical license. <br />
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I never felt I was entitled to have a woman for sex. I never wanted to make others miserable. I realize there are some autistic men who stalk women. I am not one of them and I never defended this. I certainly never defended Elliot Rodger or Alex Minnasian. <br />
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The author of the spectrum article did engage in a bit of sensationalism in my opinion and I suppose it should be no surprise that it elicited a bigoted reaction such as this. <br />
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Though autistic men who have a disability that prevents them from having a girlfriend are by no means entitled, I do believe they deserve empathy. They do not deserve to be stereotyped in a groundless fashion. I pointed this out in a polite email to the author of the spectrum article and he replied and acknowledged this.<br />
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This is a real problem for many autistic men and others with disabilities and people should not use this as fodder for sensationalism and bigotry. <br />
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Though my loneliness and celibacy has caused me frustration. I'd rather have it than be a client of Ms. Gravino.<br />
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Another female neurodiversity proponent who has weighed in on this is writer Sara Luterman:<br />
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Nobody needs another sympathetic portrait of incels. I’m happy <a href="https://twitter.com/Noahsasson?ref_src=twsrc%5Etfw">@Noahsasson</a> got the opportunity to set the record straight on how his research has been misused, but this is very frustrating. <a href="https://t.co/8IiTE0UoxX">https://t.co/8IiTE0UoxX</a></div>
— Sara Luterman (@slooterman) <a href="https://twitter.com/slooterman/status/1260623940033998851?ref_src=twsrc%5Etfw">May 13, 2020</a></blockquote>
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Also! Autistic women exist! Autistic non-binary people exist! We also have trouble getting laid and getting into healthy relationships! Somehow this has not morphed into a subculture that has inspired mass shootings!</div>
— Sara Luterman (@slooterman) <a href="https://twitter.com/slooterman/status/1260624174839746562?ref_src=twsrc%5Etfw">May 13, 2020</a></blockquote>
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To be clear: Autistic men are being radicalized on incel forums. They’re vulnerable. It’s a huge problem. No one could reasonably deny that. I am happy researchers are paying attention to the topic. <br />
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But the media conversation consistently makes me want to claw my own eyes out.</div>
— Sara Luterman (@slooterman) <a href="https://twitter.com/slooterman/status/1260624804962582529?ref_src=twsrc%5Etfw">May 13, 2020</a></blockquote>
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Sara Luterman is someone who has repeatedly published in Spectrum magazine, Washington Post, and many other outlets. I don't share her view that the article was sympathetic to incels. Though it was fairly well-balanced, if anything it provided an unflattering portrayal of of autistic men frustrated by celibacy. The article mentions Adam Lanza and<span class="css-901oao css-16my406 r-1qd0xha r-ad9z0x r-bcqeeo r-qvutc0"> Seung-Hui Cho</span> whose mass shootings had nothing to do with sexual frustration. I don't believe most autistic men are vulnerable to being turned into incel extremists. They are mostly likely born that way and don't become Elliot Rodgers or Alex Minnisians vis-a-vis indoctrination. This is a very insulting statement in my opinion. <br />
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One last point to ponder is Luterman's statement virtue-signaling autistic women as opposed to males because the males are the ones who engage in mass shootings. In the general population of mass shooters, regardless of sexual frustration being the issue or not, it is far more likely that men will commit a mass shooting than women. This is likely due to hardwired sex differences in the brain. So this is an unfair apples to hurricane comparison. <br />
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I can only hope anyone reading this post will be wary of the Amy Gravinos and Sara Lutermans of the world. <br />
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jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com20tag:blogger.com,1999:blog-8353442983052145851.post-19358487530818391792019-11-11T18:42:00.000-08:002019-11-11T19:25:46.745-08:00Steve Kapp's new neurodiversity book and it's interesting cast of characters 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.<br />
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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 href="https://link.springer.com/book/10.1007/978-981-13-8437-0">a collection of essays</a> written by some of the most prominent members of the neurodiversity movement.<br />
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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. <br />
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Some of these individuals, I had not heard anything about in years. <br />
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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. <br />
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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: <br />
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<b>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.</b><br />
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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.<br />
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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.<br />
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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 <a href="https://groups.google.com/forum/#!search/Oh$2C$20dear.$20We$20poor$2C$20sick$2C$20inferior$20autistics$20nothing$20but$20worthless$20burdens$20on$20society$2C$20aren$27t$20we.$20Rather$20than$20helping$20us$20have$20better$20and$20l/alt.support.autism/-TgxG1oLq1k/Hiwf2hVk3UcJ">here and speaks for itself</a><br />
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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:<br />
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<b>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)</b><br />
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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?<br />
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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<br />
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<b>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</b><br />
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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.<br />
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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. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com8tag:blogger.com,1999:blog-8353442983052145851.post-23946116908016705712019-08-05T15:25:00.002-07:002019-08-05T15:28:40.850-07:00Manuel Casanova's new book I'm pleased to announce that neuroscientist and autism researcher Manuel Casanova <a href="https://www.amazon.com/Autism-Updated-Treatments-Controversies-individuals-ebook/dp/B07V1VMQDD/ref=sr_1_1?keywords=manuel+casanova&qid=1565043499&s=gateway&sr=8-1">has a new book out</a>. 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.<br />
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He's also done research on Transcranial magnetic stimulation as a possible treatment for autism.<br />
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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.<br />
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In addition, Manuel criticizes the neurodiversity movement as well as journalist Steve Silberman.<br />
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Manuel now has a personal stake in developmental disabilities, as his grandson suffers from a severe genetic disorder resulting in serious neurologic dysfunction.<br />
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He's included these posts on cortical chauvinism in book form which is now available from amazon at the above link.<br />
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I attempted to publish a 5 star review of the book on Amazon, but for some reason, my review has not been posted yet.<br />
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I highly recommend this book and hope others will purchase it. (I purchased a copy, yeah) jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com11tag:blogger.com,1999:blog-8353442983052145851.post-18385119288336920482019-07-17T10:53:00.001-07:002019-07-17T11:01:21.328-07:00Yuval 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.<br />
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Recently, the magazine Scientific American <a href="https://blogs.scientificamerican.com/observations/clearing-up-some-misconceptions-about-neurodiversity"> published</a> a pro-neurodiversity piece by disabilities rights advocate Aiyana Bailin. She claimed there were misconceptions about neurodiversity.<br />
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Thomas Clements, one of the people from our side, questioned on twitter whether or not Scientific American could publish a rebuttal piece.<br />
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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. <br />
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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.<br />
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I'm happy to report <a href="https://blogs.scientificamerican.com/voices/the-neurodiversity-movement-should-acknowledge-autism-as-a-medical-disability/">They published</a> 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. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com2tag:blogger.com,1999:blog-8353442983052145851.post-71761342467268903102019-06-08T12:13:00.000-07:002019-06-08T12:13:10.199-07:00Yuval 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.<br />
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Also, about 15 years ago, I wrote <a href="http://www.jonathans-stories.com/non-fiction/undiagnosing.html">an article</a> 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. <br />
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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. <br />
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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. <br />
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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. <br />
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Yuval has also been a devoted fan of mine, who worked to promote my novel, "the mu rhythm bluff".<br />
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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. <br />
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Saying that Yuval has been a most useful ally to our uphill cause is putting it mildly.<br />
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That's why I'm pleased to announced that Yuval <a href="https://www.amazon.com/Pursuit-Knowledge-Unconventional-Articles-Neurodiversity/dp/1098783921/ref=sr_1_1?keywords=the+pursuit+of+knowledge+Yuval+Levental&qid=1560020352&s=gateway&sr=8-1">has recently published a book</a> 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. <br />
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Most of these writings are already available on Manuel Casanova's blog cortical chauvinism and elsewhere. A few of them are novel. <br />
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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.<br />
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Yuval sent me an advanced copy of his book which I've already read. <br />
<br />
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. <br />
<br />
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. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com4tag:blogger.com,1999:blog-8353442983052145851.post-81204262577694584242019-04-30T12:12:00.001-07:002019-04-30T14:04:26.932-07:00The 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. <br />
<br />
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.<br />
<br />
However, this is not enough for them. In a redux of SB's BS, Simon Baron Cohen <a href="https://blogs.scientificamerican.com/observations/the-concept-of-neurodiversity-is-dividing-the-autism-community/">has published an article</a> 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
However, these are old talking points of SB's BS and I've commented on them before<br />
<br />
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 <a href="https://autismgadfly.blogspot.com/2018/08/simon-baron-cohen-compares-people-who.html">has stated</a> 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.<br />
<br />
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.<br />
<br />
Why should wanting to cure self-injurious behavior, seizures, etc. be controversial?<br />
<br />
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?<br />
<br />
Perhaps it's time to rethink what should be controversial and what shouldn't be in the field of autism. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com8tag:blogger.com,1999:blog-8353442983052145851.post-8470397015776576432019-04-19T20:40:00.000-07:002019-04-19T20:45:11.005-07:00a 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.<br />
<br />
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.<br />
<br />
I'm fed up with people giving me easy/pat suggestions for what I can do to help my disability.<br />
<br />
The first two that I've heard the most frequently <a href="https://autismgadfly.blogspot.com/2016/08/has-autism-given-me-gift-of-prophecy.html">I've written about previously</a>. For those who aren't inclined to read the whole post, I'll recap.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
There are others I've heard, but not with the same frequency.<br />
<br />
3. Try therapy. Had 18 years of it. Been there, done that.<br />
<br />
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.<br />
<br />
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. <br />
<br />
6. Take SSRI drugs. I did. Two different ones, Prozac and Lexipro, no help there. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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)<br />
<br />
11. Get a typing tutor program so you can learn how not to make careless errors in data entry.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Thanks blog readers for allowing me to vent. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com13tag:blogger.com,1999:blog-8353442983052145851.post-73387440948734353112019-04-04T14:39:00.000-07:002019-04-28T20:25:41.363-07:00Problems 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. <br />
<br />
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?<br />
<br />
When Hillary Clinton ran for president in 2016, she proposed doing an adult prevalence study on autism. <br />
<br />
IACC public member John Elder Robison <a href="http://sci-hub.tw/downloads/2019-02-27/14/10.1002@aur.2080.pdf">has written</a> a take on this topic. <br />
<br />
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.<br />
<br />
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 <a href="https://jamanetwork.com/journals/jamapsychiatry/article-abstract/211276">here</a>.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Robison states:<br />
<br />
<b><span style="font-family: serif; font-size: 15px; left: 88.8143px; top: 744.675px; transform: scalex(1.19835);">Brugha et al. [2011] found</span><span style="font-family: serif; font-size: 15px; left: 88.8143px; top: 764.612px; transform: scalex(1.18709);"> very high rates of autism among older adults previously</span><span style="font-family: serif; font-size: 15px; left: 88.8143px; top: 784.643px; transform: scalex(1.23939);"> diagnosed with learning disabilities, and they found a</span><span style="font-family: serif; font-size: 15px; left: 88.8143px; top: 804.674px; transform: scalex(1.16312);">large number of autistic people living in group or institu-</span><span style="font-family: serif; font-size: 15px; left: 88.8143px; top: 824.61px; transform: scalex(1.15576);">tional settings. Neither of those</span><span style="font-family: monospace; font-size: 15px; left: 309.917px; top: 820.635px; transform: scalex(0.511667);">fi</span><span style="font-family: serif; font-size: 15px; left: 319.177px; top: 824.61px; transform: scalex(1.14484);">ndings are surprising.</span></b><br />
<br />
<span style="font-family: serif; font-size: 15px; left: 319.177px; top: 824.61px; transform: scalex(1.14484);">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 guesswor</span><span style="font-family: serif; font-size: 15px; left: 319.177px; top: 824.61px; transform: scalex(1.14484);">k 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. </span><b><span style="font-family: serif; font-size: 15px; left: 319.177px; top: 824.61px; transform: scalex(1.14484);"> </span></b><br />
<br />
<b><span style="font-family: serif; font-size: 15px; left: 103.744px; top: 844.641px; transform: scalex(1.14277);">According to Brugha et al. [2011], with our current best</span><span style="font-family: serif; font-size: 15px; left: 88.8143px; top: 864.672px; transform: scalex(1.20657);">estimates of prevalence, roughly one in 50 men, or one</span><span style="font-family: serif; font-size: 15px; left: 88.8143px; top: 884.609px; transform: scalex(1.17248);">in 75 people of all ages are on the autism spectrum. This</span><span style="font-family: serif; font-size: 15px; left: 88.8143px; top: 904.64px; transform: scalex(1.16276);">is consistent with contemporaneous prevalence estimates</span><span style="font-family: serif; font-size: 15px; left: 88.8143px; top: 924.671px; transform: scalex(1.21736);">for children, such as the 1 in 56 reported by the CDC</span><span style="font-family: sans-serif; font-size: 14.999999999999998px; left: 476.12183333333314px; top: 920.6954999999998px;">’</span><span style="font-family: serif; font-size: 14.999999999999998px; left: 480.1853333333332px; top: 924.6704999999998px;">s</span><span style="font-family: serif; font-size: 15px; left: 88.8158px; top: 944.607px; transform: scalex(1.13837);">ADDM (Autism and Developmental Disabilities Monitor-</span><span style="font-family: serif; font-size: 15px; left: 88.8158px; top: 964.638px; transform: scalex(1.16658);">ing Network)</span></b><br />
<br />
<span style="font-family: serif; font-size: 15px; left: 319.177px; top: 824.61px; transform: scalex(1.14484);">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. </span><br />
<br />
<span style="font-family: serif; font-size: 15px; left: 319.177px; top: 824.61px; transform: scalex(1.14484);">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. </span><b><span style="font-family: serif; font-size: 15px; left: 319.177px; top: 824.61px; transform: scalex(1.14484);"> </span></b><br />
<br />
<span style="font-family: serif; font-size: 15px; left: 319.177px; top: 824.61px; transform: scalex(1.14484);"> Robison states: </span><br />
<br />
<b><span style="font-family: serif; font-size: 15px; left: 319.177px; top: 824.61px; transform: scalex(1.14484);"> </span><span style="font-family: serif; font-size: 15px; left: 81.6363px; top: 404.621px; transform: scalex(1.16361);">With some autistic</span><span style="font-family: serif; font-size: 15px; left: 81.6363px; top: 424.652px; transform: scalex(1.23823);">adults described as tech geniuses while others require</span><span style="font-family: serif; font-size: 15px; left: 81.6363px; top: 444.588px; transform: scalex(1.14861);">24/7 support for basic living, parents rightly wonder what</span><span style="font-family: serif; font-size: 15px; left: 81.6363px; top: 464.619px; transform: scalex(1.2051);">the future holds for their autistic children. We owe it to</span><span style="font-family: serif; font-size: 15px; left: 81.6363px; top: 484.65px; transform: scalex(1.20988);">them to</span><span style="font-family: monospace; font-size: 15px; left: 140.691px; top: 480.675px; transform: scalex(0.511667);">fi</span><span style="font-family: serif; font-size: 15px; left: 149.856px; top: 484.65px; transform: scalex(1.14484);">nd some answer</span></b> <br />
<br />
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.<br />
<br />
<span style="font-family: serif; font-size: 15px; left: 96.6588px; top: 1104.57px; transform: scalex(1.17608);">I<b>n conversation with autistic people, I have often been</b></span><b><span style="font-family: serif; font-size: 15px; left: 81.6348px; top: 1124.6px; transform: scalex(1.20078);">told that adults deliberately keep their autism diagnosis</span><span style="font-family: serif; font-size: 15px; left: 81.6348px; top: 1144.63px; transform: scalex(1.31283);">out of the medical record, to avoid</span><span style="font-family: sans-serif; font-size: 14.999999999999998px; left: 363.0213333333332px; top: 1140.6584999999998px;">“</span><span style="font-family: serif; font-size: 15px; left: 370.485px; top: 1144.63px; transform: scalex(1.29165);">having it used</span><span style="font-family: serif; font-size: 15px; left: 81.6348px; top: 1164.57px; transform: scalex(1.26919);">against them.</span><span style="font-family: sans-serif; font-size: 14.999999999999998px; left: 183.02133333333322px; top: 1160.5949999999998px;">”</span><span style="font-family: serif; font-size: 15px; left: 202.202px; top: 1164.57px; transform: scalex(1.27907);">Perceived threats include higher life</span><span style="font-family: serif; font-size: 15px; left: 505.793px; top: 84.57px; transform: scalex(1.18295);">insurance premiums, higher health insurance premiums,</span><span style="font-family: serif; font-size: 15px; left: 505.793px; top: 104.601px; transform: scalex(1.16854);">and possible denial of professional licenses or even jobs.</span><span style="font-family: serif; font-size: 15px; left: 505.793px; top: 124.632px; transform: scalex(1.19055);">Those are all valid concerns and suggest there may be a</span><span style="font-family: serif; font-size: 15px; left: 505.793px; top: 144.569px; transform: scalex(1.23803);">good number of autistic adults who are aware of their</span><span style="font-family: serif; font-size: 15px; left: 505.793px; top: 164.6px; transform: scalex(1.17757);">condition but choose to</span><span style="font-family: monospace; font-size: 15px; left: 675.21px; top: 160.625px; transform: scalex(0.511667);">fl</span><span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);">y under the radar.</span></b><br />
<br />
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);">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. </span><br />
<br />
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"> </span><b><span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"> </span></b><br />
<b><span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 520.815px; top: 504.56px; transform: scalex(1.08899);">A few years ago, researchers believed most autistic people</span><span style="font-family: serif; font-size: 15px; left: 505.791px; top: 524.591px; transform: scalex(1.14471);">were intellectually disabled. That belief was founded on a</span><span style="font-family: serif; font-size: 15px; left: 505.791px; top: 544.622px; transform: scalex(1.11879);">limited understanding</span><span style="font-family: sans-serif; font-size: 14.999999999999998px; left: 652.6263333333335px; top: 540.6464999999998px;">—</span><span style="font-family: serif; font-size: 15px; left: 667.178px; top: 544.622px; transform: scalex(1.09355);">they only recognized a small part of</span><span style="font-family: serif; font-size: 15px; left: 505.791px; top: 564.558px; transform: scalex(1.09436);">the autism spectrum as we know it today. Now that our sam-</span><span style="font-family: serif; font-size: 15px; left: 505.791px; top: 584.589px; transform: scalex(1.07916);">ple is larger, we understand that the average IQ of the autistic</span><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);">population is much closer to that of the general population</span></span></b><br />
<br />
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);">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. </span></span><b><span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);"> </span></span></b><br />
<b><span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);"><br /></span></span></b>
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);">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 <a href="http://autismjabberwocky.blogspot.com/2011/08/revisiting-flawed-1-estimate-of-adult.html"> wrote about this</a> so it would appear the Brugha survey, admitted by the author himself, has no credibility whatsoever. </span></span><br />
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);"><br /></span></span>
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);">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. </span></span><br />
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);"><br /></span></span>
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);">It appears John Robison just read portions of the abstract of the study without reading Brugha's work in its entirety. </span></span><br />
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);"><br /></span></span>
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);">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. </span></span><br />
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);"><br /></span></span>
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);">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. </span></span><br />
<br />
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);">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? </span></span><br />
<br />
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);">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. </span></span><br />
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);"><br /></span></span>
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);">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. </span></span><br />
<span style="font-family: serif; font-size: 15px; left: 684.375px; top: 164.6px; transform: scalex(1.1738);"><span style="font-family: serif; font-size: 15px; left: 505.795px; top: 604.66px; transform: scalex(1.09734);"> </span></span>jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com9tag:blogger.com,1999:blog-8353442983052145851.post-46804725972106772082019-03-24T12:48:00.000-07:002019-03-31T07:26:16.783-07:00The 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.<br />
<br />
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 <a href="http://autismgadfly.blogspot.com/2017/10/deactivating-my-facebook-account-for.html">previously</a> 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
In recent months, my profile increased just a little bit when I had an unfavorable article about the ND<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Shortly afterwards, Facebook banned my blog.<br />
<br />
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. <br />
<br />
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. <br />
<br />
ADDENDUM: I reactivated my FB account and posted URL to my blog as a test, it seems the ban's<br />
been lifted. But I'm still really pissed this happened and may deactivate the account again. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com14tag:blogger.com,1999:blog-8353442983052145851.post-56353151587895475072019-03-19T14:43:00.001-07:002019-03-19T15:04:14.134-07:00Is 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
/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. <br />
<br />
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, <a href="http://autismgadfly.blogspot.com/2017/11/upload-of-paperwork-from-eric.html">I published paperwork</a> 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.<br />
<br />
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.<br />
<br />
Factitious disorder <a href="https://www.webmd.com/mental-health/factitious-disorders#1"> is an interesting condition</a> 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. <br />
<br />
One person who follows me and I them on twitter asked rhetorically why would anyone want to be autistic? <br />
<br />
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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
This is something to ponder, I believe. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com4tag:blogger.com,1999:blog-8353442983052145851.post-59780973160161513452019-02-22T13:58:00.001-08:002019-02-22T13:58:17.958-08:00Julia 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 <a href="https://www.autismparentingmagazine.com/autism-really-underestimated-in-women/?utm_content=buffer39d96&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer">can check out</a> 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.<br />
<br />
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, <a href="http://autismgadfly.blogspot.com/2018/05/are-autistic-women-superior.html">I wrote a blog post about the subject</a>.<br />
<br />
This explanation is given by multiple neurodiversity proponents who are often extremely high-functioning females.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
The most prominent of these is Autistic Self Advocacy Network President Julia Bascom. She's written <a href="https://autisticadvocacy.org/2018/04/remarks-from-julia-bascom-at-united-nations-autism-event/">a rather interesting take</a> on the subject.<br />
<br />
Ms Bascom states:<br />
<br />
<b>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</b><br />
<br />
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.<br />
<br />
<b> </b><br />
According to Bascom, racism plays a role in this and fosters an argument for social justice:<br />
<br />
<b>We still see significant underdiagnosis in communities of color, and we
still have yet to truthfully confront the role racism plays in that.</b><br />
<br />
Ms Bascom goes on to state:<br />
<b> </b><br />
<br />
<b>and the end result is that all across the globe, autistic women and girls are missed, overlooked, and ignored.</b><br />
<br />
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.<br />
<br />
<b> </b><br />
Bascom goes even further in her apparent social justice war against reported gender ratios:<br />
<br />
<b></b>
<b>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.</b><br />
<b></b><br />
<br />
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.<br />
<br />
One possible flaw in Bascom's argument can be summed up in what she concedes is a frequent characteristic of many diagnosed females:<br />
<br />
<b>One of the most common ways for autistic women to get diagnosed, in fact, is after we bring our own children in for assessment. </b><br />
<br />
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.<br />
<br />
<b> </b><br />
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?<br />
<br />
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 <a href="https://www.c-span.org/video/?444310-3/washington-journal-julia-bascom-allison-ratto-autism-spectrum-disorder">on a recent Cspan show </a>discussing these issues.<br />
<br />
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. <br />
<br />
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. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com0tag:blogger.com,1999:blog-8353442983052145851.post-491559446659364432019-02-14T11:13:00.000-08:002019-02-14T11:16:52.555-08:00My Autism Parenting Magazine article on male/female sex ratios in autism About nine months ago, <a href="http://autismgadfly.blogspot.com/2018/05/are-autistic-women-superior.html">I posted a piece</a> 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.<br />
<br />
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. <br />
<br />
However, the magazine <a href="https://www.autismparentingmagazine.com/autism-really-underestimated-in-women/?utm_content=buffer39d96&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer">a little while ago published my article as a blogpost </a>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. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com2tag:blogger.com,1999:blog-8353442983052145851.post-11357911592271214072019-01-31T22:20:00.000-08:002019-01-31T22:20:08.156-08:00How 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?"<br />
<br />
This statement rings true for the premiere neurodiversity organization The Autistic Self Advocacy Network as <a href="https://autisticadvocacy.org/wp-content/uploads/2019/01/FY2017-signed-990.pdf">as can be seen</a> in their latest publicly available 2017 990 form spent more than $175,000 than the revenue they took in that year. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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 <a href="http://autismgadfly.blogspot.com/2016/01/will-hillary-clintons-autism-policy.html">I've written in a previous blog post</a> 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.<br />
<br />
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.<br />
<br />
ASAN's current autistic representative Samantha Crane, <a href="http://autismgadfly.blogspot.com/2018/09/samantha-cranes-interesting-take-on.html">has stated</a> 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 <a href="https://juststimming.wordpress.com/2011/08/23/dear-autism-parents/">apparently believes</a> 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.<br />
<br />
These are people whom I neither would want to manage my business, finances, or autism policy, though I know those in power disagree. <br />
<br />
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. <br />
<br />
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. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com0tag:blogger.com,1999:blog-8353442983052145851.post-55041663095000237802019-01-19T12:58:00.000-08:002019-01-19T13:35:50.243-08:00Gadfly 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 <a href="https://www.spectator.co.uk/2019/01/the-dangers-of-neurodiversity-why-do-people-want-to-stop-a-cure-for-autism-being-found/">been published</a> 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.<br />
<br />
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:<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgdKyBswsM891_l26uLenVNZmJlIlw-uTiuEufTFNbIiBAheN_YT6QHfTjWkqt3CsGNxHmj67sAtoWptzDsplDI8etxGEVt-yxx000Dnhpz-GJ4-ehR0G4NFYE3OMrpwfwgsxDv8QPKBhU/s1600/silmok.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1000" data-original-width="1600" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgdKyBswsM891_l26uLenVNZmJlIlw-uTiuEufTFNbIiBAheN_YT6QHfTjWkqt3CsGNxHmj67sAtoWptzDsplDI8etxGEVt-yxx000Dnhpz-GJ4-ehR0G4NFYE3OMrpwfwgsxDv8QPKBhU/s320/silmok.png" width="320" /></a></div>
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:<br />
<br />
<div class="js-tweet-text-container">
<div class="TweetTextSize TweetTextSize--jumbo js-tweet-text tweet-text" data-aria-label-part="0" lang="en">
<b>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.</b></div>
</div>
<br />
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.<br />
<br />
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 <a href="http://autismgadfly.blogspot.com/2017/04/neurotribes-author-steve-silberman.html">justified the analogy between autism speaks and nazis and eugenics</a> but I suppose nothing about this man should surprise me anymore. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com8tag:blogger.com,1999:blog-8353442983052145851.post-88985899979455615072019-01-08T21:22:00.001-08:002019-01-08T21:29:13.698-08:00Finished 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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
I guess the lesson learned in all this is that nothing good comes easily. <br />
<br />
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? <br />
<br />
I may or may not keep readers updated about more work on this screenplay in progress. However, just in case, stay tuned. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com6tag:blogger.com,1999:blog-8353442983052145851.post-44918285435700774372018-12-11T11:39:00.000-08:002018-12-11T11:56:04.660-08:00Autism Speaks on the record As many people know, autism speaks <a href="http://autismgadfly.blogspot.com/2016/10/autism-speaks-october-surprise-they-no.html">dropped the word 'cure' </a>from their mission statement about two years ago. Until today. I was unaware they'd given <a href="https://www.autismspeaks.org/record">an explanation</a> for this. They address this issue and other statements in the link I gave in a statement entitled "for the record".<br />
<br />
They state that there are multiple autisms and no single cause. Ergo, there can't be a single cure for autism. They state science has proved there could never be one cure for all autisms, but they offer no proof for this speculation. By some convoluted logic that escapes me, they claim because there is no single cure for autism that we should not look to cure anyone's autism at all, even if this were possible. Why can't we just find a cure for each and every individual that is autistic?<br />
<br />
They also dropped the words 'global health crisis' from their mission statements. Does this mean because there are different autisms, some of them are global health crises and others are not? Why wouldn't each and every single instance of autism, not be a global health crisis, so why would they drop these words as well?<br />
<br />
In contrasting their past mission statement with their present one, it would seem they dropped any indication of autism being any sort of bad thing. Just what the anti-cure, pro-neurodiversity people would want them to do. <br />
<br />
It's also an interesting coincidence that autism speaks changed their mission statement shortly after the Los Angeles times published a scathing op ed piece about them in the los angeles times, written by neurodiversity advocate and writer, Steve Silberman. This is also when they put two pro-neurodiversity anti-cure autistic self-advocates, Stephen Shore and Valerie Paradiz, on the board amidst complaints of not having any autistic people on their board of directors.<br />
<br />
It's likely the real reason for dropping the word 'cure' from their mission statement is they wanted to appease noisy neurodiversity protesters and they were also worried about their bottom line.<br />
<br />
They also stated in their 'for the record' that they had these two autistic members on their board. Valerie Paradiz was not diagnosed until about the age of 40, many years after her own son was diagnosed, despite the fact she hung out her shingle as an autism consultant, and advertised herself as some sort of autism expert. It's strange she would not recognize the disorder in herself for so long.<br />
<br />
They say they employ a variety of autistics in various positions in their organization, but there is no transparency in who these people are and in what capacity they've served autism speaks. A couple of persons involved with autism speaks have told me AS does not want to violate these individuals'
privacy. This is despite the fact that they found persons to interview for their autism in the workplace video, publicly showing autistics in a variety of jobs. This was apparently done to encourage employers to hire autistic people, yet they did not comment on what they did in their own organization.<br />
<br />
Another statement in this also caught my eye:<br />
<br />
<i>Autism Speaks supports everyone affected by autism and recognizes the
diverse viewpoints within our community. By fostering acceptance and
understanding of autism, our goal is for all people on spectrum,<b> no
matter how they self-identify, t</b>o be appreciated for who they are and
for the contributions they can make to society.</i><br />
<br />
I'm curious as to what AS means by the statement no matter how they self-identify. Does this mean that autism speaks supports self-diagnosis and anyone calling themselves autistic, despite lack of clinical symptoms, has a viewpoint they will support?<br />
<br />
<i> </i><br />
Another point to ponder is if they support everyone affected by autism's point of view, why would they put two anti-cure pro-neurodiversity individuals on their board and not the pro-cure pro-treatment Roger Kulp who contacted them and wanted to make a contribution, but who was ignored completely?<br />
<br />
One of their talking points was that they wanted ASD people to be the best they could be-with autism. So this means they want people to remain autistic and handicapped. I want people to be the best they can be WITHOUT autism. They can never be the best they can be with autism. <br />
<br />
They've also stated in this piece that they oppose aversives as a treatment for autism and do not support or endorse organizations that use them. However, <a href="https://autisticmama.com/autism-speaks-partners-abusive-therapy-center/">they have allowed the judge Rottenberg center </a>to advertise their services at their walks. The judge Rottenberg Center has been notorious for being the main practitioner of aversive therapy for autistic persons. Matthew Israel, its founder, was expelled from the Autism Society of America for practicing clinical psychology without a license. It's possible AS allowed the JRC to advertise at their walks before they wrote 'for the record' and then stopped this practice, but otherwise, this would be an outright fabrication on AS' part. <br />
<br />
Based on these talking points, is Autism Speaks a charity worth supporting and donating to? Autism's Gadfly does not think so. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com6tag:blogger.com,1999:blog-8353442983052145851.post-5030154101205311892018-10-29T14:00:00.000-07:002018-10-29T14:00:23.689-07:00Manuel and Emily Casanova's New Autism Book Husband and wife researchers Manuel and Emily Casanova have recently <a href="https://www.amazon.com/Defining-Autism-Guide-Biology-Behavior/dp/1785927221/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1540683293&sr=8-1">come out with a new book </a>about the current state of the art about knowledge of the science of autism, titled "Defining Autism".<br />
<br />
Manuel Casanova is a neuropathologist, known for his discovery of abnormalities of minicolumns in the brain having a relationship to the etiology of autism. He's also experimented in transcranial magnetic stimulation as a treatment for autism. He's unique to autism scientists in that he has a blog,
<a href="https://corticalchauvinism.com/">cortical chauvinism</a> in which he does a good job of explaining the results of very technical scientific research (his own and others)to laypersons such as myself.<br />
<br />
His wife, Emily, a Ph.D. scientist, also has a blog "science over cuppa" in which she explains scientific research. I don't know as much about Emily and her blog, so I won't comment on that further. <br />
<br />
I met Manuel some years ago at a conference in Long Beach and had a brief conversation with him, after he gave his presentation. He spoke of minicolumns, inhibitory neurotransmitters, and the broken shower curtain effect that a lack of inhibitory neurotransmission could cause that would result in problems in an autistic brain. I knew that norepinephrine was an inhibitory neurotransmitter existing in purkinje cells which have been implicated in autism. I asked him if norepinephrine could be involved in the etiology of autism and if that related to the problems with autistic minicolumns. He replied that the neurotransmitter in question that was deficient was GABA, also an inhibitory neurotransmitter. Purkinje cells in the brain also use these as well as GABA.<br />
<br />
Shortly afterward, Dr. C started his blog, cortical chauvinism. I was one of the first persons to comment on it. I asked him if he remembered me from our meeting in Long Beach, not expecting he would as we only spoke a moment and he did not know of me before. I was pleasantly surprised when he said he remembered me. I commented on his blog not infrequently and we developed a sort of internet friendship. This resulted in his plugging my novel, "The Mu Rhythm Bluff", asking me for an autobiographical post which he published, as well as republishing posts I'd written about the controversial book "neurotribes" I'd written on autism's gadfly. I hope to someday again meet Manuel in person. <br />
<br />
There has been a dearth of books explaining the science of autism to the layperson. Emily and Manuel have done a reasonably good job of closing that gap with their new book.<br />
<br />
The first two chapters are written by Manuel. The first deals with a historical overview of how Leo Kanner discovered, wrote about and promoted autism. It also deals with Bernard Rimland's influence. The second does a good job of summarizing an overview of MC's research on minicolumns and work in transcranial magnetic stimulation. He also describes blatant pathologies in postmortem brains, such as heterotopias, which negates the neurodiversity dictum that an autistic brain is not an abnormal brain, but just an alternatively wired brain--something which unfortunately given today's state of the art is probably not possible to prove in living tissues. He neglects to cite a lot of the problems in his TMS research such as lack of random assignment of individuals as well as the problems of using a control group of sham TMS treatments which research subjects would be able to differentiate from the real deal, and are a formidable problem in evaluating this as a potential autism treatment. <br />
<br />
The subsequent chapters are written by Emily. One details what is known about the genetics of autism and how certain mutations are involved, both inherited and spontaneous mutations. She discusses the twin data in autism genetic studies. One thing she neglects to discuss are the twin studies, such as the one done by Hall et. al. in California showing a higher autism concordance in fraternal twins than in non-twin siblings. This suggests autism is at least partially environmentally mediated. A discussion of this study as well as a few others along this line would have made the book better. <br />
<br />
Next, Emily discusses known environmental components associated with autism in the past such as thalidomide and CMV. These also provide evidence against the neurodiversity dictum that autism is solely a natural genetic variation. <br />
<br />
The book also discusses autism regression. <br />
<br />
It also touches upon oxidative stress and how free radical atoms can result in brain problems in autism and other disorders, as well as mitochondrial influences in autism. Interestingly, it cites a reference showing that women produce far more anti-oxidants than men, leading to a four fold decrease in mutations. Does that four fold difference sound familiar? <br />
<br />
One of the most interesting portions of the book is a discussion of the neural mechanisms that can cause self-stimulatory behaviors in autistics, such as my twiddling. This involves an imbalance in areas of the basal ganglia, but I won't discuss further as it might be a spoiler for anyone who wants to read the book.<br />
<br />
It also discusses savantism and intellectual disabilities.<br />
<br />
The book does fall short in a few areas. There is no discussion of Dr. C's (Manuel's) research in gamma resynchronization, and his attempt to integrate TMS with neurofeedback.<br />
<br />
The book also goes into arcane areas not pertinent to autism as a lead-in to introduce authors to subjects of autism. It would be better if the authors could cut to the chase and get into the more relevant topics more quickly. Also, there was a fair amount of footnoting, which distracted from the regular text. However, this is just a preference of mine as I don't like footnoted books and articles.<br />
<br />
Though the book provides evidence for the validity of high male to female autism sex ratios, it does touch on diagnostic bias without giving much evidence. Similarly, the book talks about assortative mating without much evidence for its validity. <br />
Other than these minor flaws. It's one of the best books on autism ever written in my opinion and I highly recommend it. <br />
<br />
<br />
<br />
<br />jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com5tag:blogger.com,1999:blog-8353442983052145851.post-28082324389866697602018-09-11T23:48:00.000-07:002018-09-11T23:48:22.627-07:00Samantha Crane's interesting take on elopement. Severely autistic children often run away from home for reasons that are not necessarily apparent. There have been instances when these children have drowned or been hit by cars and killed. Parents of these kids often have to put locks on doors to prevent them from endangering themselves. These behaviors are often referred to as "elopement". <br />
<br />
For this reason, the government and other individuals have advocated using tracking devices on these children. Legislation, called Avonte's law (named after a child with autism who drowned) to get these tracking devices to the public have been proposed in congress.<br />
<br />
Ari Ne'eman and other members of the neurodiversity movement have fought these tooth and nail, claiming that this is a violation of autistic individual's civil rights.<br />
<br />
In <a href="https://www.vox.com/the-big-idea/2016/12/17/13993398/safety-autonomy-avonte-tracking-autism-wandering-schumer">one article</a> Ari Ne'eman even stated one reason that children elope may be due to physical and sexual abuse from their parents and service providers. <br />
<br />
Samantha Crane, a neurodiversity activist and one of the autistic public members of the Interagency Autism, Coordinating Committee, has recently weighed in on this matter on twitter with the following words of wisdom about elopement:<br />
<br />
<blockquote class="twitter-tweet" data-conversation="none" data-lang="en">
<div dir="ltr" lang="en">
Yeah the term often is used to problematize behavior that's completely reasonable from our perspective - people put us in situations that are intolerable, then call it "elopement" when we try to leave.</div>
— (((Sam Crane))) (@Samanticka) <a href="https://twitter.com/Samanticka/status/1039594901233651713?ref_src=twsrc%5Etfw">September 11, 2018</a></blockquote>
<br />
To date, several ND autistics have been appointed to the IACC and zero pro-cure autistics, even though two were nominated and turned down. Some may not agree with me, but I think I'm being charitable to Samantha in stating that comments such as these from an official of the U.S. government whose policy recommendations are financed with taxpayer money are somewhat insensitive in light of the fact many severely autistic children have died because of this problem. <br />
<br />
At a recent IACC meeting, Ms. Crane played a rather crafty game of bait and switch when Jill Escher, the mother of two severely autistic children, wrote to the IACC complaining that the autism diagnosis was too broad and trivialized the very profound problems of her children. Ms. Crane's response was "how do you know I don't have seizures, GI problems, or these other problems like Escher's children, but I'm not going to talk about my life." <br />
<br />
This is a woman who has graduated from Harvard law school, never needed a diagnosis until she was in her early 20s (I guess she's now about 35) in order to obtain accommodations to enable her to attend law school. Why she did not need these as an undergraduate at Swarthmore college and why she did not need a diagnosis in the 1990s in order to obtain services under the IDEA when she was a child will remain a mystery. This is because when I asked Samantha if she had a legitimate diagnosis and if she could provide documentation either to me or the government she stated she was professionally diagnosed, but I was crossing boundaries by asking these questions. I complained about her behavior to the president, my senators and congressperson, the secretary of health and human services and Joshua Gordon, director of the NIMH who runs the IACC. My concerns so far remain unanswered. <br />
<br />
Neurodiversity often bullies and harasses people and makes outrageous statements, but very few people want to get involved and complain about them to the government and private sector organizations such as autism speaks. Many parents are too busy fighting for services for their children or going through the day-to-day hassle that rearing an autistic child entails to put up a fight.<br />
<br />
However, considering all of the children who have been killed by elopement, I hope that some parents of severe autistic children will take some sort of action against people such as Ne'eman and Crane. Just think about it. Their children's lives could be at stake. <br />
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jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com4tag:blogger.com,1999:blog-8353442983052145851.post-30291674842551258182018-08-11T07:52:00.002-07:002018-08-11T08:04:20.365-07:00Simon Baron Cohen Compares people who don't want chldren to be autistic to nazis and the ku klux klan Recently, a new hashtag has emerged on twitter. #endautismnow. predictably, many neurodiversity proponents have taken umbrage at this, and have engaged in backlash on twitter.<br />
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One of their main complaints about this hashtag is that it was apparently originated by anti-vaxxer and controversial autism mom Jenny McCarthy. Because some of us want to cure autistic people and prevent people from acquiring autism, we apparently are endorsing the fact that vaccines cause autism and the menace to public health that stopping vaccines would cause.<br />
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The most renowned person to pontificate vociferous objections to this new twitter campaign is Simon Baron Cohen.<br />
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Dr. Baron Cohen and his colleagues have been well known for making claims autistics have superior visual capabilities based on small sample sizes and mismatching of autistic children with younger controls who might not have the same development.<br />
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He has written that autism versus non-autism is not different from right-handedness or left-handedness.<br />
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He's written essays stating that autism should not be considered a disability or disorder.<br />
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His most recent contribution to the autism discourse are these words of wisdom on twitter:<br />
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I am disgusted by the <a href="https://twitter.com/hashtag/EndAutismNow?src=hash&ref_src=twsrc%5Etfw">#EndAutismNow</a> campaign. This is hate speech and eugenics. How is this different to the Nazi EndJewsNow (1939-45) & the KKK white supremacist EndBlacksNow campaigns (1860-2018)? Treat symptoms in autistic people that cause suffering, but don't prevent autism</div>
— Simon Baron-Cohen (@sbaroncohen) <a href="https://twitter.com/sbaroncohen/status/1028172006661992448?ref_src=twsrc%5Etfw">August 11, 2018</a></blockquote>
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I will have to show great restraint and not lose my temper here. It should be obvious to the good doctor that there is a difference between persons who don't want children to become autistic or cure them of their autism and people who commit murder as the nazis and members of the ku klux klan have done. One would think this would be especially obvious to someone who has a Ph.D. in psychology from a major university in the United Kingdom.<br />
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How can anyone take this man seriously? Why are journals still publishing his articles and why are funding bodies still paying money for his research? <br />
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I believe this is a new low, even for this person. I believe Baron-Cohen should check into some mental health facility in the UK and get the help he needs. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com3tag:blogger.com,1999:blog-8353442983052145851.post-40614993245029039252018-06-08T12:18:00.001-07:002018-06-08T12:18:43.014-07:00#autisticdarkweb: A promising twitter hashtag and crusade against neurodiversity Neurodiversity proponents have been very effective in getting their message across and influencing policy making, both in the federal government and private sector organizations. As I've noted in this blog, there have been several anti-cure autistic public members of the interagency autism coordinating committee, which provides policy recommendations on autism to the federal government. There have been zero pro-cure autistic members appointed, despite the fact that pro-treatment, pro-cure autists, Jake Crosby and Roger Kulp were nominated and turned down. Autism Speaks is out of the autism curing and prevention business, and they no longer regard autism as a "global health crisis". Stephen Shore and Valerie Paradiz, two anti-cure autistics, have been appointed to their board of directors.<br />
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One of the reasons for neurodiversity's clout is the massive numbers of them who write prolifically on social media, particularly twitter. Twitter provides the use of hash tags, which can go viral and reach enough people if done effectively. In the past, the ND's have used #actuallyautistic and #actuallyatypical as hash tags.
When the ND's were offended by a project Autism Speaks funded entitled #Mssng, to find missing genes in autism disorders, they countered this with angry tweets and the hashtag #notmssng. One of their most effective hashtags was #don'tcombatme, which was in response to the combating autism act whose name they didn't like. Congress responded by renaming the law to something less offensive to the NDs.<br />
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For years, it seemed that I was a figurative diamond in the rough. For a time, as far as I could tell, there were no other autistic people who were attempting to refute this horrid philosophy other than your humble blogger. The anti-cure, pro-neurodiversity continued to use "the royal we" (<b>We </b>don't want to be cured, etc.). I was told by one ND that I was "the exception to the rule". Another told me that of all the autistic persons she'd encountered on the internet, I was the only one who opposed neurodiversity and did not want a cure. A few autistics wrote me or signed my guestbook on my website, stating they were glad to see me pontificate my views among the plethora of neurodiversity blogs and writings on the web. However, these individuals mostly did not have the inclination to write blog posts or refute the ND tenets anywhere online. <br />
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Recently, this trend has started to change and there's been a slow growth of autistics who see the problems with neurodiversity. Writers Tom Clements, Gwen Kansen, and Twilah Hiari have written unfavorable pieces about neurodiversity. Anorther writer, and twitter user Jonathan Ferguson (AKA One-Tongued Johnny and Wallace Runnymeade) has also spoken out against neurodiversity. Yuval Levental is another individual who occasionally contributes to the discourse about this loathesome movement and the problems associated with it. One-Tongued Johnny started a #neurodiversityishistory hashtag, but it's use was noneffective and ephemeral. <br />
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Lately, there's a new kid in town, something called the #autisticdarkweb and this is a growing hastag on twitter. Someone with the twitter handle "TreatingAutism" sums it up in this tweet:
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It's a list of <a href="https://twitter.com/hashtag/autistic?src=hash&ref_src=twsrc%5Etfw">#autistic</a> people who are critical of the dogma and intolerance of some neurodiversity advocates who often claim to speak for all people with <a href="https://twitter.com/hashtag/autism?src=hash&ref_src=twsrc%5Etfw">#autism</a>. It includes a number of talented young writers fighting back with their pens against this narrow-minded doctrine.</div>
— Treating Autism (@TweetingAutism) <a href="https://twitter.com/TweetingAutism/status/1003245543936745472?ref_src=twsrc%5Etfw">June 3, 2018</a></blockquote>
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This hashtag seems to be growing lately and I'm grateful there's a small body of people on twitter (now including myself) who will use this hashtag and challenge the ND movement. Regardless, those of us who don't like neurodiversity still have an uphill battle, but this is still a start. <br />
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jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com9tag:blogger.com,1999:blog-8353442983052145851.post-58696827248022941042018-05-17T15:08:00.000-07:002018-05-17T15:33:18.274-07:00Another video of my stand up act Here's another video of my stand up act, performed at the Improv for my class. I did stammer in a few places and the performance could have been more polished. However, I had a decent-sized audience which I usually don't get at the open mikes I go to. Also, seems I got a fairly decent reaction from an audience who didn't know me. I brought only one friend of mine to the audience, and the rest of the people were friends and family of the other 14 comics who performed in the show case, so I can presume they were impartial.<br />
<iframe allow="autoplay; encrypted-media" allowfullscreen="" frameborder="0" height="480" src="https://www.youtube.com/embed/rjxHLx7B7rw" width="480"></iframe>jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com0tag:blogger.com,1999:blog-8353442983052145851.post-59730196789610504682018-05-07T12:06:00.000-07:002018-05-07T12:06:34.415-07:00Is neurodversity's success worth the cost? ASAN's latest 990 form The neurodiversity movement has wielded considerable influence in American autism policy and thinking, both in government and the private sector. The Combating Autism Act was renamed the CARES act because ND proponents found the notion of combating autism offensive. Several neurodiversity autistics have been appointed to government posts. To the best of my knowledge, zero pro-cure, pro-treatment autistics have been appointed to these positions. <br />
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Likewise, after the Los Angeles Times published journalist Steve Silberman’s scathing op-ed piece criticizing Autism Speaks, including the frequent complaint that no autistic persons had ever been on Autism Speaks’ board of directors, this changed and they added two autistic board members, both neurodiversity proponents who oppose curing and preventing autism. One has stated that autism isn’t a disability but a strength. The other said autism is a superpower.<br />
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Stephen Shore, one of these two individuals, told me he’d been approached by Autism Speaks before Silberman’s editorial, but turned them down, stating, he’d only come on board if the organization changed certain policies. Not long after Silberman’s editorial, Autism Speaks also changed their mission statement which previously included goals of curing and preventing autism and the statement that autism is a global health crisis. These three items were eliminated from their mission statement and Shore became one of the two autistic members of their board. <br />
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Spectrum, the newsletter of The Simons Foundation of Autism Research, routinely publishes articles by neurodiversity proponents such as Shannon Rosa, Julia Bascom, and Sara Luterman. But nothing from your humble anti-neurodiversity blogger who has submitted to them on a number of occasions. <br />
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This was preceded about ten years ago by the ransom notes campaign, where a treatment center in New York advertised that autism was holding children hostage. The Autistic Self Advocacy Network, one of the premier neurodiversity organizations, found this campaign offensive and crusaded against it. This brought them national attention from a variety of major media outlets. The bad publicity and chagrin caused the treatment center to discontinue its ransom notes advertisement. <br />
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Though male to female ratios are reported to be more than 6:1 in mildly autistic individuals, these activists who claim they’re autistic are predominantly female. They now are trying to completely change the diagnostic definition of autism for females. They’ve helped secure research grants to attempt to justify the need for this, by helping to gain funding for psychologist Allison Ratto as well as other researchers. Julia Bascom, current CEO of ASAN, was one of the co-authors of a journal article by Dr. Ratto. The two recently appeared on a C-Span show together. <br />
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However, it’s possible that this clout has come at a considerable financial cost. ASAN’s 2016 990 form is <a href="https://autisticadvocacy.org/wp-content/uploads/2018/05/2016-Form-990.pdf">now available.</a> In 2016, the Autistic Self Advocacy Network spent nearly a quarter of a million dollars more than the revenue they took in that year as shown here:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3Q9UqKqFUfGTsIP1auIhbznN7qjmQYebN9tdaSdbhKOj110f9r46tpDd__Gj1qXe95jtR80cPMRKmtdShts12Yhmcz8LnEGLTZNaspgZ_L_aP5dktngpeqntyOFZoiheYL32z9NU25lTs/s1600/asan2016.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1000" data-original-width="1600" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3Q9UqKqFUfGTsIP1auIhbznN7qjmQYebN9tdaSdbhKOj110f9r46tpDd__Gj1qXe95jtR80cPMRKmtdShts12Yhmcz8LnEGLTZNaspgZ_L_aP5dktngpeqntyOFZoiheYL32z9NU25lTs/s320/asan2016.png" width="320" /></a></div>
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I’ve written previously about some of ASAN’s financial stuff, particularly about the exponential rise in CEO Ari Ne’eman’s salary which more than doubled in less than a four year period. The pace was approximately double the increase of the organization’s revenue. Ne’eman resigned as president of ASAN near the end of 2016 with Julia Bascom taking over. In 2016 his salary was about $80,000. Current CEO Julia Bascom apparently received an approximately $65,000 dollar salary for about two months of work. Most autistics, myself included, have never even made a $30,000 annual salary. Many are unable to work and are on SSI if they can get it. <br />
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In 2016, ASAN took in a little over half a million dollars. So nearly thirty percent of their revenue went to pay the salaries of their two CEO’s. <br />
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Of course, there’s the caveat that this is data is a year and a half old. This is the most recent data that’s publicly available. It’s possible in 2017, the organization’s situation changed and they managed to take in far more revenue than in previous years. <br />
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Also, 2016 was a unique year for them in that their first executive officer left his position( though remaining on the board) and so it’s hard to tell how much work Ne’eman did and what Bascom’s contributions were in 2016. We’ll have to wait until their 2017 990 form is available to see what their situation is under only one CEO. <br />
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If this situation continues though, how long will it be before ASAN is completely broke and they have to file for bankruptcy to evade creditors? Gadfly wonders whether the success the neurodiversity movement has achieved is worth the profligate spending. <br />
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Though I concede I’m not an accountant or any sort of tax expert, on reading this statement there seems to be no other conclusion an interested individual can come to than that the Autistic Self Advocacy Network as a 501© organization is nothing but a financial trainwreck. At the end of 2016 they apparently had a few hundred thousand dollars in assets left, but if the current rate of spending continues, they should be deeply in debt in a year or two. <br />
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Perhaps there’s an explanation for all of this that I’m not understanding, but I can’t imagine what it could possibly be. <br />
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Writer, Twilah Hiari recently wrote an essay entitled Neurodiversity is Dead Now What? While neurodiversity’s death may have been greatly exaggerated (paraphrasing Mark Twain), they do seem to be dying slowly. The Autistic Self Advocacy Network may not be the only neurodiversity organization or persons who crusade for this misguided philosophy, but they are certainly one of the most influential if not the largest. <br />
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I’ve been trying to take down the neurodiversity movement for years in this piddling blog with no success. But perhaps I don’t even need to do it. It seems the way things are going, they are shooting themselves in the foot and might do themselves in with their own fiscal irresponsibility. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com6tag:blogger.com,1999:blog-8353442983052145851.post-4113516351828033632018-05-03T11:03:00.001-07:002018-05-03T11:03:57.720-07:00Are autistic women superior camouflagers? or autism's a bitch. Autism's a bitch. It's made life miserable for me starting before the age of 3, when my brain gave out and I stopped speaking, threw tantrums, and smeared feces on the wall. My parents took me to a neurologist in 1958 when practically no one, including doctors, had ever heard of autism. The neurologist did not know what to make of my behavior and it was felt my problems were likely psychological rather than due to an organic impairment and I was whisked off to a psychoanalyst's couch for more than ten years. I was in special ed for eight years of my life. As an adult I was fired from a variety of jobs and had other problems.<br />
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I guess the above paragraph is old news for any regular reader of this blog for the last several years. However, I've come across a new popular question in autism research on whether or not some autistic individuals can hide or mask their disability or as the researchers put it camouflage the disabling aspects of their autism so no one would know they are handicapped.<br />
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The question of camouflaging has recently come up in autism discussions, articles, and even in academic journals because some believe the reason there's a 2:1 ratio of autistic males to females in more severe cases yet a ratio of 6:1 in the higher-functioning cases is because many autistic females fly under the radar because they are so adept at masking or camouflaging their symptoms. They won't come to the attention of school teachers, parents, pediatricians, etc. Or the pressures to fit in with non-handicapped peers and to mask their symptoms caused them to have other problems such as depression or anorexia when they really had autism all along. Or because clinicians are prejudiced against diagnosing autism in girls, they're diagnosed with something else.<br />
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Though research in the area is still new, some scientists and clinicians have published papers suggesting some autistic persons camouflage their problems and that women on the spectrum have a better ability to do this than their male counterparts. Allison Ratto, one of these researchers, <a href="https://www.c-span.org/video/?444310-3/washington-journal-julia-bascom-allison-ratto-autism-spectrum-disorder">appeared on C-Span with Autistic Self-Advocacy Network president and staunch neurodiversith proponent Julia Bascom.</a><br />
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This theory has been embraced by some eminent persons in the autism world including Simon Baron-Cohen and Autism Speaks Chief Science Officer Thomas Frazier. They state that it's likely the true male/female ratio of autism is 2:1 rather than the generally accepted 4:1.<br />
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Some female neurodiversity proponents, such as some character who calls herself "autism with skip" on twitter, have even gone as far as saying there's complete parity between autistic males and females.<br />
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There's no evidence for this statement and for it to have validity its proponents would have to explain away the female protective effect found in so many studies. I've written about this <a href="http://autismgadfly.blogspot.com/2016/10/malefemale-sex-ratios-and.html">in a previous blog post</a>
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However, the protective effect does not explain away a 6:1 or greater male to female ratio. It could still be 2:1 because certain high-functioning females weren't diagnosed. <br />
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I've also written a piece in which I point out methodologic flaws in the interpretation of the data suggesting the camouflage hypothesis as a factor, but I'm hoping to get it published as a magazine article at some point, so, for this reason, I'm not including it in this blog post. However, if I can't get it published anyplace I may write a blog post about it at some future time.<br />
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I've also corresponded with Allison Ratto about some of these points and she was nice enough to answer my email and address them.<br />
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As I've written before, the autistics who promote neurodiversity seem to be disproportionately female. Therefore, they seem to have an interest in not only ensuring that all of these supposedly undiagnosed females get their dx, but also seem to want to create an entirely different diagnostic definition for women as opposed to men. Julia Bascom <a href="http://autisticadvocacy.org/2018/04/remarks-from-julia-bascom-at-united-nations-autism-event/">has written </a>about this.<br />
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Some of these female neurodiversity proponents have stated that some women did not get diagnosed until adulthood when their son or daughter was diagnosed and only then they received a diagnosis. If they were able to have children, they're higher functioning than I am as well as most autistic persons, male or female. <br />
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If I could have disguised my autism, I certainly would have done it. It would have been nice to have friends, lovers, and a job without being fired. It would have been nice if I could have been so well-behaved as a child I could have attended a regular school. I wish I could have controlled my loud voice and funny movements, even if I had done my twiddling (self-stim) only in my bedroom at home and never demonstrated any of my movements publicly.
I've known several autistic people over the past few years, including pretty high-functioning ones and there's no way most of these people would not have been spotted as someone with some sort of problem in a pretty short period of time.<br />
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I believe it is sexist and chauvinistic to claim that women have a superior ability to disguise their autism to men. To date, there is no evidence to suggest this. The studies on camouflaging are still new and I'm sure more will come out. They should see what the data says in multiple studies before stating this hypothesis as fact or likely. <br />
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Men on the autism spectrum have just as much reason to attempt camouflage as women. They have the same disabilities and attitudes from society that would handicap them due to their problems being overt. To say women have more reason to camouflage has no basis other than prejudice. <br />
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Simon Baron-Cohen's irresponsibility is par for the course, going back to his autistic people have vision as keen as birds of prey statement which he later had to retract. However, for the chief science officer of an organization like autism speaks to state this is likely is appalling. I suppose this is also par for the course for autism speaks given their track record. <br />
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Female neurodiversity proponents new crusade to do this gives new meaning to the term autism's a bitch. jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com18tag:blogger.com,1999:blog-8353442983052145851.post-49418707759638720292018-03-29T13:46:00.002-07:002018-05-19T06:18:49.923-07:00a video of my standup act As I blogged previously, I've started to do stand up comedy late in my life. Comedy helps provide relief from the depression I feel from hating my autism disorder so much. I've uploaded this clip on YouTube. This is a rehearsal for my act in class. I hope to have another available soon, but this is what I've got now stay tuned:
<iframe width="450" height="480" src="https://www.youtube.com/embed/r1ZqsMZrnxE" frameborder="0" allow="autoplay; encrypted-media" allowfullscreen></iframe>jonathanhttp://www.blogger.com/profile/14972394536850151087noreply@blogger.com2