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.  

Tuesday, September 2, 2014

Kelly Stapleton pleads guilty to attempted murder

I've just read that Kelly Stapleton who attempted to kill her autistic daughter has pleaded guilty to the crime.  I hope this makes Neurodiversity happy.  But I guess nothing short of Ms. Stapleton's execution would please them.  Nearly a year ago I wrote a blog post where I discussed this sad case and Ari Ne'eman's reaction to it.  Ms. Stapleton had initially contemplated entering an insanity plea, but I guess she either didn't want to drag her family through the ordeal or she realized she had no chance of having it fly.  I find it ironic that an organization like ASAN comprised of at least one lawyer, at least one college professor, and graduate students alleging to be on the autistic spectrum and don't seem to do anything to help lower functioning autistics such as Ms. Stapleton's daughter would take such an interest in the case.  Before the media made much of the Stapleton affair last year, Ari Ne'eman and his ilk neglected to comment on the quality of life of nonverbal, violent persons on the spectrum who are at the polar opposite of Meg Evans, Melanie Yergeau, and computer science Ph.D. candidate Scott Robertson.  To the best of my knowledge, they never proposed any solutions to the problems of individuals such as Izzy Stapleton, but only stating that a cure for individuals such as these would be tantamount to eugenics.  

Ne'eman seemed skeptical that the justice system would do their job.  I realize it is premature to say whether this is the case or not as the woman has not yet been sentenced and we don't know what her punishment, if any, will be.  Apparently, she was prosecuted and had no legitimate defense other than alleged insanity which she chose not to invoke.  So apparently Ne'eman's allegation that the media were claiming that it is okay for parents to kill their autistic children didn't stop Ms. Stapleton's being charged with a crime.  

I still wonder why an organization such as ASAN which as of 2011 had 501(c) status can't work to solicit donations so that services exist which may have prevented this tragedy from happening.  This is not to condone what Ms. Stapleton did, but there are still a lot of things I don't understand. 

Wednesday, August 27, 2014

Kim Bodner's RPM vs. Wechsler Study published. What does this mean for neurodiversity?

As many in the autism community know, about seven years ago, Michelle Dawson published a study suggesting that the intelligence of autistics had been underestimated.  She compared the scores of autistics on the Wechsler IQ test versus scores on the Raven's progressive matrices.  On average, the autistics' scores on the Raven's were considerably higher than their Wechsler.  By comparison, a control group of  non-autistic people had similar scores on the two tests.  The neurodiversity movement made much of this, claiming this proved that autistics' intelligence had been underestimated and it showed that "autistics were not write-offs" (Dawson's words) after all.  The media reported that intelligence had been underestimated in autistics.

Some years after this, I was interested to find out that two different research studies had seemed to fail to replicate her results.  Both of them had been presented at IMFAR (International Meeting for Autism Research) but had not yet been published in peer reviewed journals.  I read the brief presentations, but I was still uncertain about everything the studies would say if they were published in a journal.

The first one had been published by Sven Boelte.  I wrote to Dr. Boelte asking him if I could have a copy of the study  and he graciously emailed me one.  Like Dawson, he found that autistics scored higher on the RPM than on the Wechsler, but the magnitude was not as pronounced as in Dawson's study and it was only found in those with IQ's lower than 85 and not at all in autistic persons with higher measured intelligence.  In contrast to Dawson's optimistic statements and those of the pro-neurodiversity media, he gave the more guarded response that it was still too early to tell if intelligence in autistic people had been underestimated and more work needed to be done on the issue.

The other study was done by Kim Bodner, who I believe at the time was a graduate student working in Nancy Minshew's lab.  From reading about the IMFAR presentation, she seemed to be saying that she had found no differences in the scores of the RPM vs. the Wechsler in individuals on the spectrum with normal or near normal intelligence.  Though her study had not been formally published, I also wrote to her and cc'd a copy to Nancy Minshew.  I never received a response from Bodner, but Dr. Minshew wrote me saying she forwarded a copy to Ms. Bodner and they'd let me know when the study was published.  This was over four years ago.

Today, I was surprised to receive an email from Ms. Bodner out of the blue, sending me a copy of the .pdf study.  It took awhile, but eventually her study was published.  I'd wondered if it would ever be published and I found out today.  For anyone inclined to read the entire study, I've uploaded it here

She had studied four groups--autistic children (up to age 16) vs. age matched controls and adults on the spectrum (17 and up) compared to a control group.  She found that in the children with autism the RPM scores were higher than their performance IQs and slightly (but not much) higher than their verbal IQs.  The RPM's of the autistics were higher than the age and Wechsler matched controls but not much so.

The more striking difference was in the adult group where the RPM of the autistics was much lower than their Wechsler  scores and the scores of the RPM of the adult control group.  These findings don't seem to replicate Michelle Dawson's.

It must be emphasized that Bodner's study had the limitations in that there were only two girls in the 37 person children with autism group and 5 girls in the 48 person typical group.  The adult group (where the RPM was low compared to other measures) had a 25:6 male:female composition of the 31 autistic subjects which is probably representative of the ratio in the general population of those on the spectrum.  It would be curious as to how a representative ratio of males to females in the children's group would fare on the RPM.  Also, the autistic subjects were all relatively high functioning (meaning they had IQs in the average or near average range).

The results of various studies support that on average there are higher scores on the RPM than on Wechsler for lower functioning autistic children who have lower than average intelligence and less verbal ability.  But for the higher functioning more verbal autistic children, there does not seem to be any advantage on the RPM.  

For adults on the spectrum, the findings of various studies are less consistent.

If there is any advantage at all on the RPM, it is probably for the lower functioning children who would probably have life problems no matter what intervention or educational strategy is used.  I believe this is more evidence that the ND movement is mistaken that certain tests or abilities are not only superior in all persons with autism, but that this proves they have special strengths in jobs or any other endeavor.