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.