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.

Monday, October 6, 2014

cool new study by manuel casanova's group with TMS and neurofeedback

Those familiar with my novel, "The Mu Rhythm Bluff", know that I wrote a fictional account of a high-functioning individual with autism who undergoes a study involving neurofeedback (training to control certain types of brainwaves) and transcranial magnetic stimulation, a technique in which specific areas of the brain can be stimulated magnetically to induce or suppress the firing of neurons in the targeted area.  Recently non-fiction has imitated my art in a study  published by Manuel Casanova's research group. 

As I wrote in my novel (and in a blog post)  about how Mu rhythms are abnormal in autistic people and how they can be trained via neurofeedback and enabling autistic people to have improved functioning, at least according to one controlled study.  Gamma is another type of brain wave that has been found to be aberrant in autistic people in various studies.  Casanova's group has done studies showing brain abnormalities (particularly in a structure called the minicolumn) in the area of the dorsolateral prefrontal cortex of the brain.  They've attempted to treat this by applying TMS to this area. 

This current study is unique in that it is probably the first study of its kind that combines both neurofeedback and TMS to attempt to mitigate autistic symptomatology in a group of experimental subjects.  The study used 42 autistic subjects.  20 of them were put into an experimental group that used combined neurofeedback therapy to improve gamma wave abnormalities accentuated by transcranial magnetic stimulation to the dorsolateral prefrontal cortex.  The remaining subjects were placed in a waitlist control group.  The subjects all had IQs greater than 80, so people with severe intellectual disability were excluded.  Participants with a history of seizure disorder, genetic conditions, etc. were also excluded which I guess is common in a lot of studies like these.  One of the interesting thing about the research subject pool is that it consisted of 34 males and 8 females which mirrors the male to female ratio of those on the spectrum in the general population of autistic people. More interestingly, the male to female ratio is probably even greater in a high-functioning group such as this where most of the participants have a normal or at least a near normal intelligence as measured by IQ test.  So, if anything, there was a high preponderance of females in the study.  This is in contrast with many studies such as this where nearly all or sometimes even all of the subjects are males. 

The subjects in the treatment group had regular sessions of both TMS and neurofeedback.  On evaluations using portions of the aberrant behavior checklist and Repetitive Behavior Scale, the treatment subjects improved far more than the waitlist controls.  Also their gamma function was improved over the controls as well as responses to various event related potential tests. 

Though interesting, the study seemed to have a few problems and limitations.  The group was rated on these measures both by caretakers and a trained psychologist.  The authors neglected to mention whether the raters were blinded to the identities of who was in the treatment group and who was in the waitlist group.  I emailed Dr. C asking him about this and he told me that the psychologist who did the ratings was blind to the purpose of the experiment, but I'm not sure if that means whether or not he knew there was an experiment and knew who was in the waitlist group and the treatment group.  I'm not sure if the caretakers knew whether or not their charge was in the control group or the waitlist group.  I neglected to ask Dr. Casanova about this and it is unclear to me.  I'm not sure how reliable caretaker and parental ratings are as they are often subjective and biased and seem to want to believe their child is improving when that is not necessarily the case. 

Another problem is that assignment to the experimental and control groups were not really randomized as there were factors and treatment choices that influenced whether a subject went into a waitlist group or treatment group. I'm not sure how much if at all this affected the outcome of the study, but Casanova and company admitted to this and stated they hoped to do a more randomized trial at some point.

Ideally, subjects would be placed in treatment and control groups at random with the control group using a sham treatment and the experimental group receiving the real treatment.  This is how I had them do it in "The Mu Rhythm Bluff".  In the real world, however, there are practical limitations in that sham TMS  treatment has been easily identified by persons in control groups and has not really been practical.  I'm not sure if sham neurofeedback is feasible.  Also, there may be ethical considerations in randomizing people in a study where controls would arbitrarily be deprived of a beneficial treatment.

Another problem that the group acknowledged was that the TMS was more limited than in other treatment protocols such as those with adults being treated for depression with TMS.  The group was comprised largely of children (ranging in age from 10 to 21 years old with the average age being about 14-1/2), so they thought that the children might be more vulnerable to an intense treatment.

Another issue I'm curious about is that not only has Casanova found minicolumn abnormalities in the frontal and temporal areas of the brain, but also in the anterior cingulate area.  I'm not sure if TMS of this area was used or not and whether that would factor into the results or if an experiment might need to be modified to account for this.  Not only have Casanova et. al. chosen the dorsolateral prefontal cortex to stimulate with TMS because of the minicolumn abnormalities found there, but also because it has rich interconnections to other brain areas that will help with the so-called cascading effect that TMS has so other areas of the brain will be influenced.  I write a bit more about this below.  

I also wonder if there will be any long term follow-up of these kids into adulthood where we can really assess the benefits of this treatment.  We will see if they can complete college, find a good job, get married, etc.  (In other words, do a lot of things normal adults do that the majority of persons on the spectrum won't be able to do without treatment).  Logistically, it may be hard to follow people into adult years.  This may have been the problem in Lovaas (1987) where attempts were made to follow the children into adulthood and funding granted for this purpose and informal presentations made at conferences but no actual studies reported on what happened to the kids as adults and if they maintained the so-called normal functioning.

Another issue I'm curious about is whether other structures of the brain besides the dorsolateral prefrontal cortex will be influenced.  Though TMS is very specific for what areas of the brain can be stimulated, the magnet only covers a couple of inches within the cerebral cortex and won't go to deep layers of the brain where areas of the limbic system such as the amygdala and hippocampus are located.  Of course, Dr. C has written about a so-called cascading effect of TMS where various parts of the brain are interconnected and can influence each other so that this treatment might influence the structures that are deeper within the brain and not just on the surface of the cerebral cortex.  I didn't write to Dr. C about this, but on a side note, I did ask him a question about whether the pyramidal cells in the prefrontal cortex thought to be involved in autism were connected to the nucleus accumbens which is an area of the brain involved in pleasurable activities such as drug use.  I knew that some of those were connected to the NA and thought that perhaps they were inhibitory cells that contained GABA as a neurotransmitter which had been found to be deficient in the minicolumns that Casanova had found to be abnormal.  I thought that perhaps this could explain my twiddling (self-stimulatory behavior) in that there was some hidden motor pleasure center that was inhibited by GABA in typical people whose prefrontal cells were connected to the nucleus accumbens.  He told me that the pyramidal cells did in fact have connections to the nucleus accumbens but they were excitatory cells that did not use GABA as a neurotransmitter.  So, I guess that's one straw I've been gasping at to find out what is wrong with myself that did not work out.

And, of course, another limitation was the use of higher functioning autistics.  We have to wonder how persons with IQs below 80 would respond to paradigms such as this one.  This is a problem rampant in autism research and not just particular to this study.  There are compliance issues with people on the lower end of the spectrum and other problems that would make them unsuitable as research subjects given the current state of the art.  

For years, I've wondered why I have these symptoms.  If, in fact, it is due to some sort of dysfunction in the brain, how is my brain different.  Why do I have to twiddle, have motor coordination problems, social problems impairing my ability to relate to people and a fear of birds and dogs I am not familiar with? Also, is it possible some sort of neuromodulation of the type that the Casanova group is experimenting with that could help these problems in me and also people like myself.  I have to ponder all this, thinking I've come upon some new thing that will enable me to understand myself and help me and everytime I seem to come to a dead end.  I don't know if research in neuromodulation such as this will help, but I find it very intriguing and I hope to be able to follow it and understand as much of it as possible, even given the limitations my disability puts upon me.   

Wednesday, September 24, 2014

Ari Ne'eman and ASAN try to take over CARES act and exclude pro-cure autistics

The government has now taken the side of the neurodiversity movement after passage of the CARES (not interested in repeating the assinine acronym) act which was formerly entitled The combating autism act.  The feds responded to all the pro-neurodiverse individuals who are against the ultimate goal of curing autism.  The government agreed with them and changed the name of the law.

However, Ari Ne'eman and ASAN are well aware of the truism first stated by Shakespeare what's in a name?  Though a rose by any other name smells equally foul, ASAN and Ne'eman have now come out with an action alert with the ironic title Will Your member of congress support autistic people.

They've also persuaded neurodiverse congresswoman Jan Schakowsky to write a letter to the secretary of HHS and the head of the national institute of health urging them to allow anti-cure autistics who want people like me to be crippled and sick and lonely and in dire straights unless we have parents to support us to dictate autism policy and ensure that only people who have alleged autism and believe in neurodiversity to dictate government autism policy and exclude those of us who wish for a cure for autism and believe autism is a disorder and not just a social disability. 

Interestingly, the letter was written by a staffer of Schakowsky's named Waverly Gordon who's so appalling ignorant of the issues at hand, he makes the false statement that only two autistics are on the IACC.  When in fact three people alleging to be on the spectrum (Noah Britton, John Robison, and Scott Robertson) currently serve on the public membership of the IACC.  All three of these people are pro-neurodiversity and anti-cure and so far zero anti-neurodiversity pro-cure autistics have been appointed to the public membership.  Waverly also stated that no members of self-advocacy organizations served, though Robertson is one of the executive directors of ASAN. 

I'd like to answer Ne'eman's question Will your member of congress support autistic people.  The answer is no.  Since they are no longer combating autism, they don't give a shit about us and how much we are suffering and how much autism needs to be combated and a cure found at some point in time.  At least 99.9% of people with autism will never be lawyers, college professors, Ph.D. candidates in computer science or young kids with influential parents who can start a 501(c) organization and pay themselves a $65,000 a year salary.  Congress does not care about real autistic people (or at least autistic people who are afflicted by their disability, unlike most members of ASAN), so the answer to the question is no.