Tuesday, December 11, 2018
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?
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?
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.
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.
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.
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.
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.
Another statement in this also caught my eye:
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, no matter how they self-identify, to be appreciated for who they are and for the contributions they can make to society.
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?
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?
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.
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, they have allowed the judge Rottenberg center 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.
Based on these talking points, is Autism Speaks a charity worth supporting and donating to? Autism's Gadfly does not think so.
Monday, October 29, 2018
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, cortical chauvinism 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.
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.
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.
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.
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.
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.
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.
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.
The book also discusses autism regression.
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?
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.
It also discusses savantism and intellectual disabilities.
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.
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.
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.
Other than these minor flaws. It's one of the best books on autism ever written in my opinion and I highly recommend it.
Tuesday, September 11, 2018
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.
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.
In one article Ari Ne'eman even stated one reason that children elope may be due to physical and sexual abuse from their parents and service providers.
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:
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.— (((Sam Crane))) (@Samanticka) September 11, 2018
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.
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."
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.
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.
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.
Saturday, August 11, 2018
Simon Baron Cohen Compares people who don't want chldren to be autistic to nazis and the ku klux klan
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.
The most renowned person to pontificate vociferous objections to this new twitter campaign is Simon Baron Cohen.
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.
He has written that autism versus non-autism is not different from right-handedness or left-handedness.
He's written essays stating that autism should not be considered a disability or disorder.
His most recent contribution to the autism discourse are these words of wisdom on twitter:
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.I am disgusted by the #EndAutismNow 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— Simon Baron-Cohen (@sbaroncohen) August 11, 2018
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?
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.
Friday, June 8, 2018
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.
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" (We 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.
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.
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:
It's a list of #autistic people who are critical of the dogma and intolerance of some neurodiversity advocates who often claim to speak for all people with #autism. It includes a number of talented young writers fighting back with their pens against this narrow-minded doctrine.— Treating Autism (@TweetingAutism) June 3, 2018
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.
Thursday, May 17, 2018
Monday, May 7, 2018
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.
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.
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.
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.
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.
However, it’s possible that this clout has come at a considerable financial cost. ASAN’s 2016 990 form is now available. 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:
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.
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.
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.
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.
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.
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.
Perhaps there’s an explanation for all of this that I’m not understanding, but I can’t imagine what it could possibly be.
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.
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.
Thursday, May 3, 2018
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.
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.
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, appeared on C-Span with Autistic Self-Advocacy Network president and staunch neurodiversith proponent Julia Bascom.
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.
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.
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 in a previous blog post
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.
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.
I've also corresponded with Allison Ratto about some of these points and she was nice enough to answer my email and address them.
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 has written about this.
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.
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.
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.
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.
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.
Female neurodiversity proponents new crusade to do this gives new meaning to the term autism's a bitch.
Thursday, March 29, 2018
Sunday, March 18, 2018
He extols the autistic self-advocacy network as an exemplary organization that has effected change in government and other areas. He feels the parents and grandparents who run the show at autism speaks are wrong to speak for autistics who don't like autism speaks.
Yet he feels fine with an organization consisting predominantly of extremely high-functioning women, including a college professor and a Harvard law graduate who is married, despite the fact there is purportedly a 6:1 ratio or more of high functioning male autistics to females speaking for the bottom 99% of autistics, myself included.
This is not to mention the fact that ASAN has encouraged self diagnosis in their members, so we don't even know if a good number of them are genuine autistic persons or not.
They reserve the right to use "the royal we" for autistic people by saying "we" don't want to be cured "we" don't like autism speaks, and "we" believe in neurodiversity.
ASAN also purports to speak for the lower functioning children and not even give the parents a voice as far as their own child is concerned.
It's interesting that autism speaks also has two autistics on their board of directors. Both of them oppose a cure, both of them are or have been married, one never attended a special ed school as I did for eight years, I doubt the other one did. One has stated that autism is a superpower. The other stated that autism isn't a disability but a strength. One was not diagnosed until they were 40 years old years after their own son was diagnosed and years after they offered their services as an autism consultant for hire. Interesting someone expert enough to charge money as an autism consultant would miss the possibility of autism in themselves for years.
I'm still waiting for ASAN to put a male pro-cure, anti-neurodiversity autistic on their board of directors as well as a pro-cure parent or two.
The double standards of John Robison never cease to amaze me.
Tuesday, March 13, 2018
They recently did this with Judith Newman's "To Siri with Love" when the author expressed the idea she might want to obtain a conservatorship of her son, so she could have him undergo a vasectomy because she did not feel he could be a good father to children. People wrote to her publisher protesting the book, she received abuse and fuck yous on twitter and she alleges she even received a death threat. A few ND's even started a petition to have her son taken away from her, but then backed down.
There's a new book slated for publication "Autism Uncensored" by author Whitney Ellenby who depicts the angst of raising a severely autistic child. Several ND's apparently wrote John Koehler, the publisher, urging him not to publish the book, apparently they also threatened him with some sort of legal action, but the details are unclear. He has responded to the ND bullies.
I was every bit as offended by Steve Silberman and "Neurotribes" as these people are about Ms. Ellenby and "autism uncensored", but I did not threaten Silberman. I did not write to his publisher urging them not to publish or recall the book. I read the book cover to cover before judging it and then giving it the one star review it deserved on Amazon.
The ND's have taken umbrage to Koehler's statement that their actions make them appear less than intelligent and Silberman (him again) has been a provocateur on twitter, trying to incite the ND's, and we're sure to see fireworks:
What on God's earth? This is an official statement from a publisher? Oy gevalt! https://t.co/MdEoec1aFq pic.twitter.com/pbitO9HAcB— Steve Silberman (@stevesilberman) March 13, 2018
Gadfly commends Mr. Koehler for his decision not to back down and to respond to the ND bullies the way he did.
Saturday, March 3, 2018
Some people, John Elder Robison, most prominent among them, have criticized my anger and my negativity, stating I should devote more time to positive pursuits rather than spreading negativity. I've recently taken their advice and I'm now pursuing a new hobby, stand-up comedy. I've been taking a class in standup and two nights ago I reached a milestone at age 62 of performing my first open mike at a club. I was nervous and pretty sure I'd bomb before I went on. However, the performance went a lot better than I thought and I got some laughs and positive feedback from the small audience. I hope to do more open mikes in the future and I might publicize where i'm appearing on Facebook and Twitter.
I realize I'm not unique in being an autistic standup comedian. On perusal of the internet, I've discovered Byron Filler, Scott Vasquez, and Kevin Lucas. Better known than they are is the infamous Noah Britton and his Troupe Asperger's 'R' us. My short act includes humor about celibacy, The Good Doctor, celebrity diagnosis, my lack of success in writing, and that sick joke in the autism world, Autism Speaks. I haven't come up with any really good barbs about the neurodiversity movement, but I hope to do so someday as I still feel they are another joke in the autism world that's in poor taste.
My disability has made my life difficult. Humor can ease the pain of adversity, and might be useful as a Freudian-style defense mechanism. It's no coincidence that many comics have suffered from depression, Robin Williams probably the most well known of those. In my life, I may have made the mistake of taking a lot of my issues too seriously. I'm still not happy about autism or being autistic. However, I'm stuck with it and nothing I can do about it. Very late in life, I realize that sometimes you have to have a sense of humor about things.
I've had a multitude of interests: Poker, computers, writing, brain science, and, of course, autism. I tried to become a brain scientist or experimental psychologist many years ago, but failed to do well enough in college to get into graduate school. I took courses in computer programming, but was never good enough to do it professionally, and lost interest after a while. I've written some articles and books, both fiction and nonfiction, but was never able to get anywhere with my writing and have not been doing as much lately. I've lost a fair amount of money at poker, but it helped inspire my self-published novel, "The Mu Rhythm Bluff." Therefore, this standup thing may turn out to be another lark, and I may soon lose interest in it. However, it's good to have new hobbies and pursue shit and not put all your eggs in one basket.
Some people have asked me about videos or seeing a performance. I hope to eventually have some videos up someplace. I also may publicize where I perform at some point and people who are in the Los Angeles area or close by might get to see me live. We'll see what happens with this new endeavor and I may or may not keep people posted about it on this blog and social media.
Sunday, January 21, 2018
I’m an individual with an autism spectrum disorder that wishes to bring to your attention, problems with governmental autism policy, specifically with the Interagency Autism Coordinating Committee. This committee conducts policy recommendations for the federal government. The CARES act mandates that at least two individuals purporting to be on the autism spectrum are appointed as public members. So far, seven individuals who are opposed to curing and treating autism have been appointed, who believe in a philosophy called neurodiversity which purports that autism is not a medical condition, but an alternative form of brain wiring. Zero pro-cure, anti-neurodiversity autistics have been appointed as public committee members, though two have been nominated and turned down. I think this is totally unfair and it is not within the spirit of the law as the CARES act states that the viewpoints of committee members should be fair and balanced.
Furthermore, the two current autistic committee members, John Elder Robison, and Samantha Crane are very functional people who appear to have no overt disability. In fact, John Elder Robison has stated he has no disability. Samantha Crane is a very successful Harvard trained attorney.
Apparently, a person who purports to be autistic who wants to serve on this committee only has to self-identify and not provide any proof of a professionally obtained diagnosis. I asked them about this on social media and John Robison claimed that I was insulting him. Samantha Crane stated that there was no reason she should have prove her autism and made the false statement that she was not appointed to the committee because of her autism. Though Ms. Crane said she’d release her medical records to the IACC upon request, but not to the general public.
I write you this letter, urging you to introduce legislation to amend the CARES act to require public members of the IACC with an alleged autism diagnosis produce proof of professional diagnosis to the committee and the general public, and explain to the stakeholders in the autism community how autism has impacted their life and disabled them.
I wrote to the IACC via their invited public commentary that I felt the autistic public members should provide proof of a professional diagnosis and explain how in spite of their apparent functionality, how autism is impacted their life and how they are the least bit similar to the 99.9% of autistic individuals they serve and state they represent.
Afterwards, Ms. Crane, on social media, made the false statement that I was “told to mind my own business” and that “I was harassing the Interagency Autism Coordinating Committee” for writing polite and invited public commentary that she did not happen to agree with.
I don’t believe that people who are stakeholders in the interest of a public committee should be spoken to this way, on social media, or anywhere else. I’m hoping you can write the acting Secretary of HHS, and the Director of the National Institute of Mental Health and deal with Ms. Crane’s absolutely unprofessional behavior. I also feel the house and the senate should investigate the IACC and how the Department of Health and Human Services is vetting public members of the Interagency Autism Coordinating Committee and also introduce legislation to change the law, requiring autistic committee members to provide proof of a professional diagnosis and explain to stakeholders how their autism handicaps them. Your help in this matter is appreciated
Here's Ms. Crane's tweet:
Moreover, you've already complained to IACC and been told to mind your own business. You are free to keep harassing them if you want, since that is your First Amendment right. But you're not going to get anywhere bothering me on Twitter about this. No means no.— (((Sam Crane))) (@Samanticka) January 18, 2018
For those who feel as I do, I urge you to write the congress, the department of HHS and the president, and send comments to the IACC about this and maybe we can do something about this.
Thursday, January 18, 2018
I posted my second entry on January 20, 2008, where I discussed whether or not being opposed to neurodiversity meant being opposed to human rights.
Ten years seems an appropriate milestone to celebrate an anniversary, but to discuss the issue more thoroughly, some backstory is needed.
In 2002, I was on the national radio show Studio 360, plugging my first (and failed and unpublished) novel, The School of Hard Knocks about an 8-year-old autistic boy’s experiences in an abusive special education school, as well as a satirical take on the Individuals with Disabilities Education Act. An individual named Tim Boucher was so impressed with my interview, he built me a website which became Jonathans-stories.com, where I published some of my short stories and non-fiction writings. It also had a journal section powered by blogger, that I wrote in sparingly.
Some years later, I wrote my initial critique of the movement I loathe so much: Neurodiversity: Just Say No. Harold Doherty read my article and publicized it on his blog. This initiated some controversy among ND proponents who were not happy with my essay. This included the famous autistic autism researcher Michelle Dawson. She stated that she wanted to comment on my article, but that my Jonathan’s Journal did not have commenting and that Doherty would not allow her to comment on his blog. Others wanted to comment. I decided to start a more traditional blog that allowed commenting and I moderated comments.
Michelle Dawson engaged in an online temper tantrum, stating that because I moderated comments, she would not comment on my blog and that I was an opponent to human rights, though she acknowledged she did not know what rights I specifically opposed. I turned off moderation and invited her to comment on my blog, but she still declined.
After some of the nastier ND’s began to be extremely abusive to me, I turned comment moderation back on.
It’s been an interesting decade. I’ve discussed a variety of topics in my blog posts, but the majority of posts dealt with taking on the neurodiversity movement. I began to grow a small following and started receiving several comments on various blog posts.
A variety of coups took place. I found out from Steve Shore that Ari Ne’eman would be in Newsweek. I wrote about this asking for equal time. After Barack Obama appointed Ne’eman to the National Council on Disabilities, he denied that he’d ever said autism was not a disability while the senate decided whether or not to confirm him. I exposed statements where in fact Ne’eman did say that autism and Asperger’s were not disabilities. After publishing them on Gadfly, Ne’eman attempted to re-write history by editing one of the essays where he said autism was not a disability. Left Brain/Right Brain’s Matt Carey publicized the edited version, denying Ne’eman ever stated autism was not a disability Ne’eman, while denying he’d said autism was not a disability, acknowledged he’d made a mistake in the words he used in his essay, admitting that he could have been construed as implying it. He further stated that if that was the worst mistake he’d ever made in print, he’d consider himself lucky.
When someone was using Wrongplanet.net to threaten to carry out a mass shooting, I publicized this in my blog and reported the individual to the FBI. They apparently contacted the Swiss authorities where he lived and he was dealt with.
I’ve received a lot of flack from various people due to my blog posts. I’ve tried to keep a cool head, though sometimes I failed and I regret that. This happened when I was being mocked and insulted on the Whose Planet is it Anyway blog run by “The Autistic Bitch from Hell”. I didn’t turn the other cheek and wrote angry and inflammatory things back. I won’t offer apologies for my behavior, but I will offer regrets.
The media also took an interest in my blogs and writings. Andrew Solomon in his New York Magazine article on Neurodiversity gave me token mention to provide faux balance. He also mentioned me in his book, Far From The Tree. Benjamin Wallace also mentioned me and what I’d written about Simon Baron-Cohen in another New York Magazine article. A journalist in Australia also mentioned me on the website of a public television station article. A British journalist was going to interview me for the Sunday London Times, but that fell through. I published an article in Los Angeles Magazine. I was also on the NPR show, morning edition talking about donating my brain to science (regrettably Autism Speaks). Robia Rasheed used this to inspire the first scene of the first episode of her Netflix show Atypical. My desire for equal time in Newsweek was also granted some years later and the magazine did a profile about me, though they insulted me in the print edition with the title a hater’s guide to self-hating.
Though I can point to a few accomplishments, there are also the failures. For the past ten years, I’ve blogged against the neurodiversity movement, trying to show how flawed it is. Despite this fact, my pleadings seem to have fallen on deaf ears (though I may have figuratively preached to the choir who embraced some of my messages).
I never dreamed that the federal government would embrace neurodiversity and appoint several ND proponents to government posts relating to autism and appoint zero pro-treatment, pro-cure advocates. I never dreamed they would rename the Combating Autism Act to the CARES act because the term ‘combating’ offended neurodiversity proponents.
I never dreamed that the Autism Society of America would have people like Alex Plank and Steve Silberman as keynote speakers at their conferences.
I never dreamed that Autism Speaks would give up the search for a cure and prevention and change their mission statement, and appoint Nds to their board of directors However, given their half million dollar grant to Laurent Mottron, their putting John Robison on a science advistory board, and their funding of Alex Plank’s inane Autism Talk TV, I guess it should not have come as a shock.
Last but not least, I never dreamed the media would fete Steve Silberman and his book Neurotribes, enabling it to become a New York Times best seller.
I suppose nobody ever said that life was supposed to be fair.
Another interesting event happened yesterday which appropriately gives good culmination to my tenth anniversary. At yesterday’s meeting of the Interagency Autism Coordinating Committee, John Robison mentioned comments I’d written to the agency, where I said the U.S. government should concentrate on doing science research that will lead to treatments and cures for autistic individuals and not concentrate on neurodiversity and accommodations. He also noted the comments I made that he and fellow IACC member Samantha Crane should provide proof of a professional diagnosis of autism or forfeit their seats on the committee. Ms. Crane also mentioned the fact I’d written to Dr. Joshua Gordon about her and JER’s attitude, and that she should release her medical records to Dr. Gordon, showing a professional dx as a condition of her serving on the IACC. She stated she would not release her medical records. In some subsequent interactions on twitter she stated that she was not appointed due to her autism, so her diagnosis had no relevance.
The reason I was nominated want my diagnosis, that's why they didn't ask for it— (((Sam Crane))) (@Samanticka) January 17, 2018
It's because I'm a representative from ASAN, a national autistic self advocacy organization, where I am director of public policy.
I am not there to talk about my own personal life.
This is outright dishonesty on Ms. Crane’s part, as the law specifically states that autistic persons are to be appointed to the IACC, ergo a large part of the reason she and Mr. Robison are there is because of their alleged diagnoses of autism.
I don’t understand how two such functional individuals, one a graduate of Harvard Law school, merit a diagnosis of autism, and I feel they should explain it to the public they serve as well as provide the IACC with documentation from a clinician they’ve been diagnosed. I don’t believe this is asking for too much. However, Robison and Crane think so, though Crane stated she'd release her medical records to the IACC if asked, but not the general public. In addition, my emails to Joshua Gordon, the acting secretary of HHS, and president Trump asking them to do something about this remain unanswered. This is the way it goes.
Ms. Crane and JER are not the only individuals whose autism I’ve expressed skepticism over. My detractors have occasionally turned this on me, saying that people could express skepticism toward my alleged disability and say Jonathan Mitchell can’t be autistic for xx reasons. I should provide some sort of proof of my diagnosis.
Though, unlike Crane, Robison, and others, I’ve never used a dime of taxpayer money to promote my agenda, my critics are absolutely right. It was a mistake for me to question others’ dx without providing some evidence of my own. Therefore I’ve rectified the situation and uploaded some paperwork from the Courchesne research group of my diagnosis that I used in my Disability case several years ago. I welcome anyone whose autism I’ve expressed skepticism of to do the same.
John Robison has repeatedly criticized me for only writing negative things about the neurodiversity movement on my blog and not trying to do something positive for the autism community. I’d much rather be a brain researcher, geneticist, or a wealthy philanthropist and do research to find answers for developmentally disabled people, or fund the research or fund jobs programs and housing for autistic people than engage in angry tirades against the neurodiversity movement. However, I don’t have the millions of dollars of autism speaks. Unlike James Simons, I’m not a multibillionaire, and I sure don’t have the resources of the federal government.
My ambitions to go to graduate school and become a brain researcher, experimental psychologist, or what not, didn’t pan out, so I can’t do research that might help ASD people at some point in time.
However, I do feel my work in exposing the nastiness and dishonesty of the ND movement is important and I feel it does good to point out all the harm they’ve caused and how their influence in both the private and public sector are impeding research into autism that could lead to scientific advances that can help those of us affected and their families.
Contrary to what some of the nastier Nds have asked me and/or written about me, I’m not a parent disguised as an autistic person writing these things. I don’t forge positive comments on my blog. I’m not paid to write these posts by Autism Speaks, Generation Rescue, Age of Autism, or Jill Escher or anyone else ND’s have accused me of accepting money from.
So, though I’m not blogging as much anymore, I will continue to speak out against ND from time to time, and maybe, on occasion, write blog posts on other topics also. Anyway, happy tenth anniversary to Autism’s Gadfly and We don’t need no stinking neurodiversity.
Addendum: Now Ms. Samantha Crane is stating that I'm harassing the IACC by writing invited public commentary which is polite albeit critical of some of its members and the organization's procedures:
Moreover, you've already complained to IACC and been told to mind your own business. You are free to keep harassing them if you want, since that is your First Amendment right. But you're not going to get anywhere bothering me on Twitter about this. No means no.— (((Sam Crane))) (@Samanticka) January 18, 2018
Wednesday, January 3, 2018
Mr. Walker has also complained about Temple Grandin and John Elder Robison, referring to them as "tame autistics". Apparently, they are not strident enough in promoting the neurodiversity movement or adopting a bellicose enough attitude to suit Saint Nick. Based on some of my behavior on the internet over the years, I don't think he could say that about me. Though our ideologies are diametrically opposed, I think Walker or anyone else would have a hard time calling me a tame autistic. If anything, I've been a pretty controversial and wild autistic.
I recently renewed my interest in Walker as some months ago (though I was not aware of this until recently) he was claiming Autism in a Different Key authors John Donvan and Caren Zucker were in the process of making an anti-neurodiversity documentary. This was something I'd be interested in seeing. He warned neurodiversity proponents about this, urging they not consent to be interviewed by the authors as they would present any pro ND in the most unflattering manner possible. He correctly states that Donvan and Zucker presented Ari Ne'eman in an unfavorable manner in their book. It could be argued it was well-deserved, and if anything they were being charitable to Ne'eman in not presenting to their readers how truly bad he's been over the years.
If they're making this documentary, I'm curious why they didn't contact me. After all, I've had a pretty high profile as an autistic anti ND activist. I've been profiled in Newsweek, I've been on public radio shows and the Autism Live podcast, presenting this. Or perhaps Donvan and Walker don't want to get my side of the story, assuming this statement is not a fabrication on Walker's point. I won't provide the link to it, but the interested reader can certainly find it on YouTube and other places. I'll be interested to see if this documentary Walker claims is in the works will ever be made. I guess I'll see it if it is and it's available to me.
My interest was particularly piqued by some of his writings in a piece titled "five steps toward autism acceptance." He states:
Individuals and organizations that speak of autism as a “disease” or “tragedy,” and that talk of “curing” it, should be prosecuted for hate speech and incitement to violence, just as if they were advocating a “Final Solution to the Jewish Problem"
I have repeatedly said that I believe autism is a disease, a tragedy, and I've brooked no quarters in stating that I want to cure it. According to Nick, I should be a criminal and I should be prosecuted and apparently imprisoned. Apparently, Walker has never heard of something the people who founded this nation more than two hundred years ago wrote called the constitution. The very first amendment to the constitution gives us the right to free speech. Apparently Walker would like us to live in stalinist Russia. As a Jew, I'm also offended that Walker would bring my ethnicity and the holocaust into this. I strongly suspect that Walker is not Jewish unlike myself.
Walker is certainly not on the fringe of the neurodiversity movement. His neurocosmopolitan website is frequently quoted by individuals as giving valid information as to what the neurodiversity movement itself is about. It appears high in the google search on neurodiversity.
I feel the same way about describing autism as an alternative way of being rather than a disorder or the statement that people who want to cure autism are advocating prenatal abortion and genocide. But I would never advocate denying an ND proponent their free speech, no matter how vehemently I disagree with them.
I wonder how long it will be before Walker is appointed as an autistic member of the IACC. How long will it be before Autism Speaks has some involvement with him or maybe appoints him to their Board of Directors? Will the Autism Society of America have him as a keynote speaker at one of their national conferences? I wonder when I'll be imprisoned for stating my beliefs about autism because it's hate speech and I'm inciting violence. The way things are going in the autism world, it might not be a long way off.