Thursday, December 11, 2014

Will Neurodiversity provide the #mssng link?

Several months ago it was announced that Autism Speaks had partnered with Google to sequence of the genomes of 10,000 persons on the autism spectrum and their family members.  It was hoped that the project would find clues to the etiology of at least some forms of autism as it is quite possible if not probable that they partially originate from some form of genetic mutations.

When I first heard about the partnership between AS and Google I wondered if, to be consistent, whether or not the members of neurodiversity would boycott Google.  If they urge boycotts of other organizations involved with autism speaks perhaps they should not use a google search engine, not use blogger blogs and never again view or post a video on youtube.  As far as I know, none of them have done this yet.  Nor, to the best of my knowledge, have they written a letter to Google urging them to severe ties with the organization they hate so much as they've done with Sesame Street and other groups who have had an association with autism speaks.  Or even if they would claim that this project would result in eugenics.  Now, apparently they have taken some action.  

Autism Speaks has used a promotional gimmick to advertise this partnership of using the term mssng with certain letters deliberately omitted.  They have also used #mssng as a hash tag on twitter.  They apparently meant that certain information was missing in autism and were not directing it at autistic people.  Only hoping that missing answers could be found to help autistic people.

Predictably, members of the neurodiversity movement have taken umbrage.  They have responded angrily, that they are not mssng, there is nothing wrong with them, autism speaks are evil ogres who are insulting them and are even trying to destroy them.  They have added their own hash tag on twitter, #notmssng.

Others have provided more tempered responses stating that what is mssng are supports and services.  At the forefront of this is one of ND's most prominent proponents John Elder Robison.  He's written a response to the mssng campaign.  Interestingly enough he states that he favors genetic research of this sort, but says it would not be a priority of his.  Then he goes on to state we are spending money in the wrong places and should not be looking at the "autism riddle".  He states that we need therapies and other services to fill in the gap and that these are obtainable.  He not only stated that there should be funding for these endeavors, but that it should be administered by autistic people.  If he has such great ideas with all of his money, power and influence, and he does not agree with Autism Speaks' spending priorities why he doesn't start his own 501(c)  organization and attempt to do this and fund certain projects or suggest what and how they can be funded?  How can someone disabled by autism be accommodated so they can have a job, a lifetime partner and other goals.  How can a nonverbal autistic be treated and accommodated so that they can speak?  What research can be done that will help autistic people in the here and now, since Robison complains that genetic research will not help anyone in the foreseeable future.

ASAN is now a 501(c) organization run exclusively by autistic people, exactly the type of enterprise that Robison is talking about.  They have made similar claims that acceptance and accommodations will solve everything and that if AS spent their money more wisely we could achieve the goals that Robison has discussed.  In Gadfly's opinion, ASAN has failed miserably in this regard.  I have read their stuff and yet, I can't recall them having written what accommodations and therapies can help autistic people.  They only want to tear down autism speaks and persons, like myself, who want to find a cure.  They demonstrate against autism speaks and talk about how terrible it is, yet don't seem to want to provide any solutions of their own the problems autism causes, regardless of whether it's a medical disability or a social disability.  Out of their $300,000 dollar budget $65,000 alone goes just to pay Ari Ne'eman's salary.  Much of the rest of the money goes to other staff members pay and rents on offices.

I realize that ASAN's response to this is that since people wrongly perceive autism to be a disease or a defect rather than neurodiversity's description of an alternative form of brain wiring they will donate money to autism speaks and if ASAN had the millions that AS does and not merely a few hundred grand in assets perhaps they could provide research into supports and accommodations and therapies that would help autistics now and not decades from now.  I don't believe that poor capitalization is an excuse.  I'm still waiting for suggestions from Robison, ASAN, or any other members of the ND movement for that matter as how this can be done.  They are saliently lacking in those suggestions.


 Will the ND movement at some point in time provide the #mssng link?  I won't hold my bated breath.

Tuesday, December 2, 2014

What does current supreme court free speech case bode for Wrongplanet.net and its members

There's a story in the news that's been gaining some traction as of late that has piqued my interest.  It is about an individual named Anthony Elonis, a former amusement park worker, who wrote lyrics in the form of rap poetry threatening to kill his estranged wife as well as an FBI agent who questioned him on Facebook.  There are federal laws against making such threats and Elonis was prosecuted and convicted.  He is now going before the Supreme Court stating that these laws against posting idle threats that he did not intend to carry out violate his first amendment right to free speech and are therefore unconstitutional.  Elonis claimed that these weren't actually threats but were in fact rants he was making in order to blow off steam and that a reasonable person would not believe these were actual threats.  His attorney, John Elwood gave these as arguments.  From what I've read, SCOTUS won't render a decision on this matter probably until next summer, but based on their responses to Elwood, they don't appear to be ruling in Elonis' favor.  Hopefully they will render a verdict that threats such as these don't constitute free speech protected under the first amendment.  

Does this sound familiar to the few regular readers of Autism's Gadfly?  It should because one poster on wrongplanet.net did something very similar. Like Elonis, this person gave a similar rationale for his actions, stating it was only a rant to blow off steam and not an actual threat.  Apparently this person was not an American, but lived in Switzerland where the laws may be different.  He was apparently questioned by authorities and may have been subject to prosecution from what I gathered from reading what he said.  If he were in the U.S.A. he probably could have been prosecuted under the same laws that Elonis was.

In another instance, an individual named William Freund  posted on Wrongplanet that he was going to hurt some people.  These were not idle threats, but Freund actually carried them out and murdered two people.  Alex Plank and whatever other persons were responsible for running things at Wrong Planet neglected to report this individual to the authorities.  If they had, lives may have been saved.  I was the one who reported the second individual to the FBI and that is probably the only reason the Swiss authorities were investigating him.  This individual has not been banned from Wrong planet but is still a member in good standing.

I doubt very much that Facebook or any other website that Elonis posted such things would allow him to do so.  Yet Wrongplanet is fine in being complicit with illegal activities and not reporting actions such as these to law enforcement authorities and allowing them to continue to do so and allowing people who violate federal laws to be members in good standing.   

I believe that not only is it possible there will be a third such incident (assuming there have not been others that I don't know about) but I suspect based on the type of people who post on Wrongplanet it is highly probable that there will be.  I'm not sure what the law is, but I wonder if Plank or anyone else involved in the day-to-day administration of Wrongplanet can be prosecuted for complicity in these things.  I know that Plank and Wrongplanet were sued by the family of the persons Freund murdered, but I don't know what the outcome of the suit was, whether Plank settled with the family or whether or not a judgment was rendered and I'm not sure what Plank's and WP's liability is in such a circumstance.

However, I believe something should be done about this.  I'm not sure I have the time and inclination to monitor WP for such posts, but I believe this website and it's administrators should be watched.  I hope the Supreme Court won't allow this to be constitutionally protected free speech.  I am in favor of the first amendment and free speech, but I believe a line should be drawn somewhere and threats such as these should not be called "rants" or be constitutionally protected.

I can only hope that law enforcement authorities will be watching Plank and his buddies on WP.  If there is no law where these people can be prosecuted for this stuff, I hope that congress will enact one and if it happens again Plank and other staff members of Wrongplanet will be prosecuted to the fullest extent of that law.

However, this does not seem to be the case.  Plank was a keynote speaker at ASA, Autism Speaks funded his and John Robison junior's inane videos, he was also a consultant on the defunct TV show The Bridge.  Plank continues to bask in glory despite his misdemeanors.  I'm not sure I understand this, but I hope if  the SCOTUS does not render a favorable verdict in this case, that it won't bode well for Wrongplanet and individuals who write posts such as these and something will be done.  

Sunday, November 9, 2014

certain autism advocates cavalier attitude about Seinfeld's self-diagnosis

I suppose the story about Seinfeld stating that he believes he's someplace on the autism spectrum isn't going to die down anytime soon (at least a few more days).  So, perhaps this post is overkill, but I'd like to add some of my thoughts on the comments of various high profile persons and organizations involved with autism who don't seem to mind trivializing the disability that makes life so hard for so many of us.

Ari Ne'eman stated that Seinfeld's self-diagnosis shows that the autism community is larger and more diverse than most people realize and sends a positive message.  He believes it helps someone at a job who has not disclosed their autism diagnosis to their employer and co-workers not have the stigma of this condition.  He also implies that stigma rather than disability or impairment is what limits opportunities for those on the spectrum.  He believes that it will build greater tolerance of autism. I don't think most people will actually believe the comedian has any sort of ASD and autism is still autism, Ari.  It's still going to disable people from working, finding relationships, etc.  Whatever stigma exists is still going to be there.  People still won't tolerate behavioral problems from autism, including the neurodiversity movement's opinions of people like Christian Weston Chandler.  Loud voices, poor social skills, meltdowns in public places will still exist and Seinfeld's comments won't change that.

Author and autism advocate John Elder Robison  has also gotten into the act  in the linked essay he wrote for his Psychology Today blog.  He states that he believes it's a good thing that important, well-known people identify with autism and he elaborates.

Mr. Seinfeld’s speculation that he “may be on the spectrum,” may be the first step in an actual diagnosis or evaluation, and it may be a milestone of his journey of self-discovery. Many people are critical of self -diagnosis, but the fact is, most adult diagnoses start by people asking themselves, “might I be autistic?”  Seldom are adults handed this diagnosis out of the blue.  So before we attack self-diagnosis let’s remember that’s how “real diagnosis” begins for many adults.

Somehow I doubt that Seinfeld will see a psychologist or psychiatrist for a formal diagnosis as it does not affect his abilities in any way and he would have sought professional help for his lack of social understanding and taking things literally if he'd thought it were warranted.  The same is true of  neurodiversity poster boy Vernon Smith who self-diagnosed himself with a Simon Baron Cohen AQ quiz.  Yes, I'm critical of self-diagnosis, because until someone is diagnosed by a trained clinician, that's all it is, a self-diagnosis, even if people start out with that and it remains so until validated by a professional.  It trivializes people who really have the condition and suffer.  I wonder about the people who never received diagnosis until adulthood.  Were they nonverbal as children, didn't their parents know something was wrong with them?  Did they attempt to get a diagnosis for something even if they're middle aged in a time that diagnosis was not well known?  These are points to ponder.

I won't comment on Robison's other talking points further, as they are the same old, same old and I've discussed them previously.

Such insensitive commentary is par for the course from both Ne'eman and Robison.  We've been hearing this stuff from them for years, so it comes as no surprise.  But what about other people whom Gadfly believes should know better?

Liz Feld, president of Autism Speaks had the following to say:

 “there are many people on the autism spectrum who can relate to Jerry’s heartfelt comments about his own experiences.” 

To me, this is an insensitive statement since Jerry's rational for believing that he's on the spectrum certainly doesn't reflect with diaper wearing head bangers or even the much higher functioning people who actually have legitimate diagnoses who can't hold down a job or get a date.  But I suppose I shouldn't be surprised at this statement from an organization that would have John Elder Robison on their science advisory board, fund Laurent Mottron and support Alex Plank's Autism Talk TV.  However, autism speaks does promote the idea that they're interested in curing autism on their walks and fundraisers and on their web page (Though I'm wondering if they really feel that way) so don't know why they'd trivialize the condition that they want to raise money to understand and ameliorate.


Autism Society of America President Scott Badesch also commented

 
Recently, Jerry Seinfeld is suggesting he might be on the autism spectrum. For so many of us, Jerry has been an amazing person who has made us laugh and taught us many lessons about life.
He is a wonderful person and if he is in fact an individual on the spectrum, we are delighted that he will be an example for everyone to see the beauty, intelligence, skill, and everything else that defines so many who live with Autism Spectrum Disorder.

There is nothing beautiful about autism.  It is a horrible disorder that afflicts people in a pernicious manner.  It is disappointing that the leader of a large Autism group would say things like that, but I suppose I should not be surprised that an organization that would support Ari Ne'eman being on the National Disabilities Council and have Alex Plank has a keynote speaker at one of their conferences.

As I said before, Ne'eman and Robison's insensitivity are par for the course for them so not quite as shocking.  But it is hurtful (at least to me) that these other two organizations who I'd think would be interested in helping people afflicted with autism would make such cavalier statements.  






 

Friday, November 7, 2014

Seinfeld on the autism spectrum?

Renowned comedian Jerry Seinfeld has apparently recently decided that's he's somewhere on the autism spectrum.  The reason is that he does not pay attention to the right things, takes things literally and has trouble with "social engagement".  I'm not sure what that term means, but I presume it's his ability to relate to people and make friends and find significant others, which is frequently if not almost always impaired in autistic people. (I'll discuss this further later in the post).    Mr. Seinfeld has apparently diagnosed himself rather than bothering to consult a clinician.  One of the reasons for this may be that he seems to believe his autism is not a dysfunction but an alternative mindset.  He joins John Elder Robison in insisting that he's on the autism spectrum in spite of not having a disability of any kind.  This makes his belief similar to what members of the neurodiversity movement have been saying about autism for years.  Or that it is only a dysfunction because it is not adequately accommodated.

Will ASAN, the Thinking Person's Guide to Autism and other pro-neurodiversity organizations adopt Seinfeld as one of their own, ask him to endorse their cause and help them raise money?  The answer is not entirely clear since about five years ago or so, Mr. Seinfeld along with Bruce Springstein hosted a benefit for autism speaks and helped them raise nearly two million dollars.  This contrasts with the nearly fifteen thousand dollars that ASAN lost in one of their fundraisers not long ago.  Because of this, Seinfeld and Neurodiversity  had previously been at loggerheads as I've written in the linked post.  In the post I linked to a video that ASAN made in which Seinfeld is harassed by various ASAN members as he enters the concert hall in New York City to give his Autism Speaks benefit performance.  Unfortunately, this video has been made private on youtube and can no longer be viewed by the general public.  Of course, AS put Robison on their science advisory board, funded Alex Plank and Robison junior's Autism Talk TV and gave half a million dollars to neurodiversity scientist Laurent Mottron.  So, I suppose I should not be surprised if Seinfeld decided to do a benefit for ASAN.  It is certainly a fund raising idea for Ari Ne'eman to think about as he may not be able to afford to give himself another 62% annual salary increase if ASAN can't think of a way to raise additional revenue.  Perhaps Mr. Ne'eman will consider getting Jerry to switch over from autism speaks and give a benefit for ASAN.

Neurodiversity has never cared about people diagnosing themselves.  Economist Vernon Smith diagnosed himself using a self-administered quiz, yet that has not stopped them from promoting him as an example as to why autism should not be cured.  As well as using him to claim autism has some sort of benefits to society.  

Since Seinfeld and I are almost the same age, I wonder how he'd have felt if he had to attend special education schools (and sometimes being abused there) in the sixties.  If he'd had to spend more than ten years in psychoanalysis because Bettelheim's theories were in vogue at the time.  How he would have felt if he had a phobia of birds, had been a chronic bedwetter until age 13 and could not get things done during the day because he was compelled to engage in twiddling (or some other self stimulatory behavior)  I wonder if he had the same rejection from peers as I did as a child or how he'd feel if he had.

Seinfeld claims that he has trouble with social engagement.  I wonder why this did not impair his ability to meet and date women and eventually marry one.  One way that we are different is in popularity with women.  I'm nearly Seinfeld's age, and though I have some casual dating with women, i've never had a full-fledged girlfriend.  Seinfeld in his late thirties dated Soshana Lowenstein who at the time was only seventeen when she first started going out with the celebrated comedian.  Next came girlfriend Carol Leifer.  Seinfield finally settled down and married Jessica Sklar at the ripe age of forty-five. 

As for a contrast in our abilities to support ourselves, I no longer work and am supported by family in contrast to Seinfeld who has made millions.  I wonder how Seinfeld would feel if he had to spend more than four years unsuccessfully trying to get disability and know that he'd end up being homeless if he didn't have a supportive family. 

Interestingly, Seinfeld is admired by an individual on the autistic spectrum who has also been quite unsuccessful with women and has gone out of his way to advertise for a girlfriend, sometimes in a crude manner.  Christian Weston Chandler has made a you tube video in tribute to the comedian he admires.  Chris Chan has often been a foil for various members of the ND movement.  I've written about Chris previously.  I never really understood why the neurodiversity movement always preached for acceptance of autistic individuals yet a good number of them always wanted to criticize this individual or even ridicule and make fun of him.  The fact that he's such a huge fan of Seinfeld's might discourage ASAN from approaching the comedian to do a fundraiser for them, but I don't know. 

Compared to most on the spectrum though, I've had it quite good and have worked in the past and am pretty high-functioning though it has impaired my life to a significant degree.  There are others with intellectual disabilities, who can't talk, engage in self-injurious behavior and smear feces on walls.  I don't think it is helpful for celebrities such as this man to trivialize this condition which affects so many people.   

Wednesday, October 29, 2014

Gadfly boos congressional letter and neurodiversity's and ASAN's dishonest talking points

With Halloween right around the corner, we see that neurodiversity and the autistic self advocacy network is still up to its dirty tricks without giving autistic people and their families any treats.
They've apparently lobbied five congress persons to write a letter on their behalf dishonestly claiming that autistic self advocates (a euphemism for neurodiversity proponents who oppose a cure for autism) are severely underrepresented in autism policy making recommendations in the federal government.  ASAN recently published the linked post on their website in which they applaud the letter these five congresspersons wrote on their behalf. 

The letter signed by these members of congress at ASAN's and neurodiversity's behest contains one absolutely false talking point:

The Inter-Agency Autism Coordinating Committee (IACC) housed at the National Institutes of Health (NIH), is the body tasked with developing the HHS Strategic Plan for Autism Research.  The IACC currently has only two individuals on the autism spectrum and no member from a self advocacy organization out of fourteen public and twenty-eight total members.  

The talking point that I've emphasized in the black highlight is blatantly false.  The IACC currently has not two , but three individuals alleging to be on the autism spectrum:  Scott Robertson (who helped start ASAN with Ne'eman, more about this later), John Elder Robison, and Noah Britton.  The no member from a self-advocacy organization statement is also false since Scott Robertson is a member of ASAN and one of the top people in the organization, aside from Ari Ne'eman, ASAN's president.  There have also been two other persons on the spectrum who have been on the IACC in the past, Ari Ne'eman and Stephen Shore, who have both opposed curing autism.

What is not a lie is that to date zero pro-cure, pro-treatment persons on the spectrum have been appointed to the public membership of the IACC.  Of course, the old standard argument is that there are very few if any autistics who look upon autism as a disorder that needs treatment or possible cure or that none are able and willing to serve.  This is also not true, as Roger Kulp, an individual with  cerebral folate deficiency on the autism spectrum who is anti-neurodiversity and pro-treatment (I'll let Roger speak for himself as to whether or not he is pro or anti cure) has expressed an interest in being a public member of the IACC (as well as filling the vacancy for an autistic in an advisory position at Autism Speaks after John Robison tendered his resignation) yet has been completely shunned by Thomas Insel, the secretary of health and human services, autism speaks  and other powers that be. 

ASAN is only interested in having pro-neurodiversity and anti-cure and anti-treatment autistics serve in positions of power.  So when they say all persons with autism this is also blatantly false.

Anyone who lives in the districts of the following five congress persons, I urge you to vote for their opponent in the upcoming election:

1. Jan Schakowsky.  2. Kathy Castor  3.  Tammy Duckworth   4.  Jackie Speier  5. Paul Tonko.

I can only wish these despicable members of the house of representatives could be voted out of office next week, but I realize that's an opium-induced dream, but here are their names for edification.  

I doubt the congress people came up with these false statements out of thin air.  They were supplied what were probably deliberate misstatements of fact by ASAN.  It is very sad that these people have to stoop to dishonesty to get their way and close out sane people who want to end the pain and suffering that this horrible disorder causes.  All I can say is booo hisss, razzz.  


Wednesday, October 22, 2014

American Psychological Association gives John Elder Robison and neurodiversity the seal of approval

Neurodiversity has gained acceptance in a variety of places.  Autism Speaks has funded rogue researchers Laurent Mottron and Isabelle Souleries.  Ari Ne'eman, John Elder Robison, Noah Britton, and other members of this deranged cult have been appointed to government posts.  Alex Plank was a keynote speaker at an Autism Society of America Conference.  The ASA also endorsed Ari Ne'eman's appointment to the NCD.  As can be seen on John Robison's twitter account, another organization has given them the seal of approval:





As can be seen by this tweet, the american psychological association has encouraged this inane philosophy that states that autism is not a disorder or disease (or even a disability according to some proponents) but an alternative form of brain wiring which can be completely or largely resolved with  accommodations.  What is even more bizarre is that a course taught by a high school dropout (at least as one of the teachers) is approved for continuing ed credit if you want to remain a licensed clinical psychologist.

I can't believe how outrageous this is.  To me the term "neurodiversity" is just as offensive as the term "retard" is.  It is a slap in the face to people on the spectrum and their loved ones who really suffer from this disability, unlike Robison who has stated that in spite of having an autism/asperger's diagnosis he has no disability of any kind. I hope that at some point the day will come where others are just as offended by this term as I am and the ND movement is censured by the government and organizations that should be trying to do things to help autistic people rather than trivializing it and insulting those of us who suffer from this affliction. I hope that at some point when people hear this foul word, they will be just as offended as hearing "retard" or the N word for a black person or the F word for a gay person.   






Friday, October 17, 2014

Darius Mccollum in jail again, neurodiversity offers no solution

Old time readers of Autism's Gadfly will remember that I've previously written about Darius McCollum, the individual alleging to have Asperger's syndrome who has OCD and an uncontrollable desire to take joyrides in busses and trains.  For the uninitiated, to recap briefly, McCollum spent a great deal of time learning about the new york city subway system and would hang out with personnel and learn all the ins and outs.  He would spend time impersonating the subway drivers and actually drive the subways.  When he wasn't doing this, he'd steal buses and drive them.  He's been arrested multiple times for his offenses and has done some years of prison time.  He knew what he was doing was wrong but could not help himself.  Various medications to control his OCD didn't work.  After serving time in prison, he was paroled. 

Unfortunately, he's in the joint again for violating his parole.  He missed two meetings with his parole officer.  Neurodiversity still hasn't offered a solution to Mr. McCollum's dilemma.  I'm still waiting.