Friday, June 8, 2018

#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.

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:

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

Another 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.

Monday, May 7, 2018

Is 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. 

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

Are 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.

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

a 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:

Sunday, March 18, 2018

John Elder Robison's incredible double standard

I see that one of my favorite autism authors, John Elder Robison is at it again John Robison speaks about the neurodiversity course he teaches at William and Mary, and a lecture he apparently gave about lobbyists in government. He alleges that Autism Speaks only speaks for parents and grandparents of autistic persons and not for autistics themselves. According to him, only organizations represented by autistics have credibility, and not those who he believes speak for parents.

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

book publisher stands up to neurodiversity bullies

The neurodiversity movement is well-known for their hardball tactics.  The latest item in their metaphorical Felix the Cat bag of dirty tricks is to harass parents who write and publish books that  depict autism in what they feel is a less than flattering light.  They also contact publishers of the books urging  the book be recalled and possibly threaten the publishers with legal action. 

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:






Gadfly commends Mr. Koehler for his decision not to back down and to respond to the ND bullies the way he did.