Tuesday, December 11, 2018

Autism Speaks on the record

As many people know, autism speaks dropped the word 'cure' from their mission statement about two years ago.  Until today.  I was unaware they'd given an explanation for this.  They address this issue and other statements in the link I gave in a statement entitled "for the record".

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 and Emily Casanova's New Autism Book

Husband and wife researchers Manuel and Emily Casanova have recently come out with a new book about the current state of the art about knowledge of the science of autism, titled "Defining Autism".

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

Samantha 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".  

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:

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

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.

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.

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

#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.