Tuesday, July 22, 2014

Jenny McCarthy's son bullied

I've just read an article that saddened me a good deal about Jenny McCarthy's son being bullied due to his autism.  What was even sadder is that he apparently lacks the social understanding to know that he's being bullied.

Ms. McCarthy has generated a great deal of controversy in the autism community due to her stance that vaccines cause autism, and, for that reason, a lot of people were outraged when she got the job as one of the anchors on the television show, The view.

On a side note, I met the former playboy centerfold at an autism conference about six years ago that my friend Steve Shore was presenting at.  She had recently appeared on the Larry King show stating that she had never met an autistic adult.  Steve, another friend of Steve's and mine, and myself introduced ourselves to her.  I pointed out that now she had met some autistic adults.  Her response was, "you guys are awesome."

I think about all of the bullying I had to endure growing up as a child due to my autism, so this article hit home with me.

What is sadder was McCarthy's view co-host Whoppi Goldberg's inane suggestion that she discuss the problem the the bullies' parents.  Somehow I don't think she's going to be able to meet every parent of every kid her son might come across.  I wish I had a suggestion for Jenny but I don't.

Usually, I was aware that other kids were bullying me, except occasionally when some girls in junior high (called middle school nowadays) pretended to flirt with me and for a while I did not understand they were making fun of me.

Bullying is not a real problem for me nowadays, though the pain does not go away very easily, even after decades.  I still get bullied occasionally by some of the less than savory members of the neurodiversity movement.  I just try to shrug it off, though occasionally I did rise to their bait.  I regret it now and hope I won't do it again.  But that's okay.  I realize it's the price I have to pay for daring to publicly say I want a cure for autism to be available and that I believe autism is a horrible disability and actually having the flippancy and chutzpah to write it on my blog.

Though I realize Ms. McCarthy has been a controversial figure in the past and is unpopular with some people, we should still have sympathy for her and what her son are going through and it is truly shameful that this has to happen.  Regardless of how anyone feels about McCarthy personally, they can still feel sadness about what is happening to her son and what sort of life he may lead as he grows older and will likely have to endure more of this. 

Other than making bullying a psychiatric diagnosis in the DSM, and sending bullies to a segregated special ed school just for bullies,  which I've suggested doing in a previous article I wrote , I'm not sure what can be done. But reading this did make me sad and think of the bullying I had to endure in my youth. 

Thursday, July 17, 2014

My meeting with Marco Iacoboni

I've previously written about my interest in mirror neurons and their possible involvement in autism. I've also written about Marco Iacoboni, the UCLA neuroscientist who has done a lot of the pioneering research on mirror neurons in humans. These are neurons that fire, both in response to performing an action such as a hand movement, but also fire when observing a hand action. These neurons are also associated with mu rhythms, brain waves found over the prefrontal motor strip. These rhythms are suppressed in both typical and autistic people when they observe a motion of their own hand. They are suppressed in typical people when observing the movements of others. In autistic people mu rhythms still occur in the brain when they observe movements of other people. I won't go into all of the minutia here. If anyone is interested, I've written a more detailed post about this here Dr. Iacoboni has also done work in TMS (transcranial magnetic stimulation) where a magnet is put up to the brain and stimulates it by creating a voltage so that a group of neurons will have action potentials so that various areas of the brain can be enhanced or suppressed.  Though I don't know a whole lot about TMS, it's an area of research that interests me.  It was my interest in these subjects that partially inspired my novel, "The Mu Rhythm Bluff".   

After I read Dr. Iacoboni's book, Mirroring People, I sent him an email asking him a few questions I had about the book and the field of mirror neuron research.  He was very gracious and answered my questions. At various times I've exchanged email with him.  Later, we became friends on facebook.

Due to loneliness from my autism, from time to time I take advantage of the chat feature on FB and message people.  Not everyone is into chatting in real time when they are on FB, but Dr. Iacoboni would sometimes chat with me.

There's been a growing interest in using TMS to research the autistic brain or even as a possible treatment for autism.  Manuel Casanova has been one of the people to do research in this area.  Also Harvard researchers Alvaro Pascual-Leone and Lindsay Oberman have worked with TMS.  Peter Enticott in Australia is another scientist in this field. 

Iacoboni and his colleagues are now possibly interested in doing research in this area also.  Therefore, he thought it might be good if I could meet him and some of the people in his lab so they could get an exposure to a high-functioning person with autism.  So, yesterday, I went to the lab and met the people.  They asked me some questions and I gave "The Mu Rhythm Bluff" a plug. 

Next, Dr. I gave me a brief tour of the facility.  There has been some research (though I admit I'm not familiar with most of the details) suggesting that under connectivity in the brain may be one of the causes of autism.  That is neurons with very long axons that would connect distant parts of the brain with each other may be underdeveloped in autism.  Dr. I seemed to believe that with TMS treatments they could improve the connectivity distant areas of the brain have with each other in autistic people.

One of the problems with TMS may be the magnetic pulses don't reach more than two inches into the brain.  Some of the deeper structures of the limbic system, such as the amygdala and the hippocampus, which may be involved in autism lie deeper than this.  However, there is a theory that there is a so-called "cascading effect" where various areas of the brain are interconnected to each other.  This is why Manuel Casanova chose to stimulate dorsolateral prefrontal cortex in his subjects.  Because it was an area of the brain interconnecting many other parts, aside from the fact that his postmortem autopsies found minicolumnar abnormalities in this area.

Of course, no one knows exactly what is going wrong with the autism brain, so which areas to stimulate or inhibit may not be viable option for research.  

I'm not sure if TMS will ever be an effective treatment for autism, but I would very possibly be interested in being a research subject in this endeavor.  I don't know if I will be or not, but I'll post future developments in the blog. 

I enjoyed meeting Dr. I and his staff and hope to see him again some day.  

Thursday, June 12, 2014

Autistic superiority on embedded figures test and resultant employability: fact or fiction?

Autistics have superior skills that can help them find jobs!  Headlines such as these have become  frequent fodder in the popular media.  Persons on the autism spectrum are said to have superior "attention to detail".  This makes them superior candidates for jobs such as TSA screeners and software testers.  Companies such as SAP, Specialisterne and Aspiritech are training high functioning autistics to be software testers and debuggers.  A statistic cited in a lot of these articles is that 85% of autistics are unemployed (I have no notion of where this statistic comes from)If we can only tap all of the superior skills autistics have where they outperform typical people the problem will be solved.  These people will find their niche and the lack of social skills or other deficits that people on the spectrum have will be immaterial to their occupational success. 

Where does this nebulous term "attention to details" come from?  At least one of the sources is the commonly held belief that autistic people outperform non-autistic people on the Embedded Figures Test-a test where a person has to find a hidden triangle in a larger image or a Where's Waldo type of picture.  Simon Baron-Cohen has said that this shows that autistic people have "attention to details".  Laurent Mottron and Michelle Dawson have cited various studies showing that autistics outperform non-autistics on this test.  They apparently believe that this superiority will enable autistics to be better educated and help them get jobs and even get along better with their parents.  This was the rationale that Autism Speaks gave when awarding them a research grant totaling nearly half a million dollars.

Probably the first study of autistics' performance on the Embedded Figures test was done by Uta Frith and Neil Shah.  They found that the autistics outperformed the non-autistics in both speed and accuracy.  The reason they gave for the superior performance was something called weak central coherence, meaning that autistics have a poor ability to see the large general picture of things and therefore have difficulty understanding context.  But the upside is that they might think about things in the smallest parts and therefore might be more attentive to minute details than a typical person.  This could give them a superior ability in math and engineering for instance, even if they had resultant deficits in other areas.  In other words, though the autistic may miss the forest for the trees, they are superior at seeing the trees in the forest.

Have Frith and Shah's findings been uniformly replicated by independent investigators or is this superior attention to detail (as measured by the Embedded Figures Test) an urban legend?  According to a paper by British cognitive scientist Sarah White, the latter may be true rather than the former.

She cites the sixteen studies published subsequent to Shah and Frith's work that had group designs in which autistic person's performances were compared to controls on the Embedded figures test.    Only two of these studies replicated the accuracy difference between autistics and typical controls.  Of the remaining fourteen studies, half (seven) showed that autistics were able to find the embedded figures more quickly than controls but were either no more accurate or accuracy rates were not cited in the papers.  One of the papers showed differences in accuracy only between low functioning autistics and matched controls but no differences in the higher functioning autistics.  One paper showed the autistics were less accurate than matched controls on the test. I'll discuss later what this means in terms of suitability for jobs such as software tester or airport screener.  There were a variety of possible reasons for the discrepancy in studies such as differences in the way the test was administered, different groups of controls vs. autistics.

In White's study, she used a very large sample of  high-functioning (as measured by IQs) autistics vs. intellectually matched controls and found no differences in accuracies on the EFT between the two groups.  The autistic group performed the task slightly more quickly, but the difference was not statistically significant.  

One salient difference that stands out is that the group differences in accuracy were generally detected with more severely autistic persons rather than persons with milder forms of the condition.  This is particularly relevant to Frith and Shah's work in that it was published in the early 1980s when the definition of autism was different from that of today and it is unlikely their findings would have applicability to people more mildly autistic that would not have been diagnosed as such at that time.

Most of the persons who would be candidates for the above-cited jobs based on an "exceptional attention to detail" would be considered at the milder end of the spectrum.  Assuming Frith and Shah's weak central coherence theory of autism has any validity, it is unlikely that it would be applicable to these people whose central coherence would most likely be closer to that of a typical person's.  Therefore, it is less likely, according to the actual science, they would have these alleged assets that would help them in these professions.

According to some, the seven out of seventeen studies that showed superior speed on the test would be demonstrative of an autistic superiority.  I don't agree, particularly if you are applying the research to enable autistics to perform jobs or stating this research shows they are suited for these occupations.  I know from personal experience accuracy does matter.  In the days when I was still a medical transcriptionist, my production levels were on par with that of the non-autistic transcriptionists.  However, I made more mistakes and this cost me a variety of jobs.  This was also true in the other professions I worked in before I retired.  In the business world, you could be the fastest employee in the world, but if you're not more accurate, you're kaput. 

Though I've read White's article, I have not read the other studies and I will admit to that.  If there is something White gets wrong or something else I am not understanding, I guess people can let me know in the comments section.  Also, there may be other tests given to autistics that allegedly measure attention to detail that I don't know about.  I believe the embedded figures test is the main one though.

I want to sum up to say to anyone reading this article, don't get me wrong.  I think it's great that people would want to train persons on the spectrum for various jobs and I hope they succeed in the jobs, regardless of whether they have good attention to detail or not.  Whatever will enable a person with autism to succeed, I'm all for it and if they can be a success in a job, all the power to them.   I hope that SAP, specialistirne and others can help autistics.  Though, I've been very critical of John Robison in the past, I do applaud his efforts to train people on the spectrum in the automotive profession.   However, I don't think it's helpful to promote what are likely urban legends based on a lack of demonstrated science or science now made obsolete by a different definition of autism where more high functioning autistic people are identified.

Tuesday, June 10, 2014

Write congress, urge a no vote on HR 4631

The neurodiversity movement has again succeded in one of their inane crusades, persuading congress to change the name of the Combating Autism Act to the Autism Collaboration, Accountability Research, Education and Support (CARES) Act.  Autism Speaks who funded Laurent Mottron and had John Robison on a science advisory board has also gotten into the act . When this law was originally passed, it was the now defunct Cure Autism Now, that lobbied for it.  The original intent was to do research to find a cure for autism and end this nightmare that affects so many of us.

Ari Ne'eman, John Robison and their cronies found the language in the act offensive and so congress is changing the name of this law while reauthorizing it.

The ND movement has already succeeded in packing the interagency autism coordinating committee with members of their warped ideology.  To date, not a single pro-cure, anti-neurodiversity autistic has been appointed to the public membership of the Interagency Autism Coordinating Committee.

Even when this was called the combating autism act, it was a very bad law.  Not just because of all the members of ND that were appointed to public membership, but the fact that it spent millions of dollars on the CDC's autism surveillance program which gives the phony 1 in 68 number which was acquired by looking at school and health records of kids and counting them as autistic if anything at all suggested they had this condition, regardless of whether or not there was an actual diagnosis reported.  This money does absolutely nothing to help those on the spectrum.  Their other work does nothing to help autistic people.  

Now, the proposed law states that autism should not even be combated anymore.  Is a rose by any other name just as foul smelling as before?  I really don't know.

We need to get rid of this law and allow the private sector to take over.  I wish the government would just return the 260 million bucks this law authorizes to the taxpayers who have a stake in autism.  Hopefully an awesome private sector foundation would support sane scientists who would find treatments or even a cure for this horrible disability from which I suffer every day.  I realize this is an opium-induced dream and there is no way I can make it happen.

One thing we can do, however, is write our congress person, urging them to vote no on this legislation which has the new name that implies we should not try to find a cure for autism.

I've written my congress person.  I hope any American who reads this and agrees with me will do the same. 

Tuesday, May 27, 2014

More Words of Wisdom on Autistic Unemployment

I was interested in reading yet another article giving easy and simplistic solutions on the problems of unemployment among autistic people entitled How the Hiring Process Marginalizes Candidates on The Autism Spectrum.  The article starts out claiming that half a million persons with autism are educated and hirable.  I'm not sure where this half a million figure comes from and the article does not explain it.

The article starts out misrepresenting the 1 in 68 number, as do so many people who write about autism.  It claims that many of these autistic go on to higher education and are employable, but are unemployed because societal constraints on the hiring process.

The article quotes Marcia Scheiner, president and founder of the organization ASTEP (Asperger Syndrome Training and Employment Program) who discusses how important doing well on an interview is to the hiring process and how persons on the spectrum are at a disadvantage because they don't interview well.  I've written about ASTEPpreviously if the interested reader is curious about this organization.

I question how many persons on the spectrum (regardless of whether they have asperger's or autism) really have qualifications right out of college which would enable them to do a variety of jobs.  Jobs requiring no paid experience are few and far between, particularly in a bad economy.

If a person has the skill set, I believe they can be hired for a lot of different jobs, despite lack of interviewing skills.  I worked sporadically as a medical transcriptionist between 1986 and 2007.  To get my foot in the door I had to do piecework as an independent contractor at less than minimum wage.  Once I garnered some experience, I was able to get other transcription gigs.  No one did extensive interviewing of me for these positions.  They were easily able to administer tests to gauge my ability to do the job by giving me a report to transcribe.  If you can pass tests like these, you have the job, in spite of a poor ability to interview.

When I was trying to get into the computer field, lack of education and experience led me to fail a test in one company I applied for, that did not get me the job.

I know of one individual on the spectrum who has a math degree and has tried to become an insurance actuary but has failed the preliminary exam which can get you hired.  What difference does it make whether he can interview or not?

I know of another individual on the spectrum who stammers when he speaks and probably would not be counted as someone who could do well at job interviews, yet he has had a number of jobs, albeit menial ones.  Apparently lack of interviewing skills did not stop him.

One of the main problems I have with this piece, it only addresses autistics who graduate from college (or possibly a vocational school) and not others who will never do that.  The majority of person on the spectrum probably have disabilities that would prevent them for acquiring a skill set, regardless of any alleged societal constraints.  

What about when someone with autism is hired, presuming they have the skill set?  Do they have an ability to get along with coworkers?  Do they have overly loud voices which would be unpleasant for others and prompt their dismissal from the job?  Would they have executive functioning problems which might preclude good hygiene and result in their being fired?  Neither the author of this piece nor Marcia Scheiner address this issue.

I believe the best possible way for a person on the spectrum, assuming they can achieve the higher education and the skill set, is to become as skilled as possible in a profession by practice and possibly doing an unpaid internship.  This is far more sensible than the ridiculous notion of changing society and getting them to overlook an interview process which probably would not even be relevant in hiring if the person had the skill set.

Again, there are no simplistic or easy answers to this. 

Sunday, May 25, 2014

point by point rebuttal to John Robison's IMFAR speech

In the better late than never department, I've decided to give a point by point rebuttal to a speech given at IMFAR by one of neurodiversity's most prominent proponents, John Elder Robison.

Again, Robison uses the 1 in 68 figure for autism prevalence so frequently misrepresented by autism advocates and media pundits.  He claims to have served on the NIH and CDC committees that discussed the formulation of research at how those numbers were arrived at, yet is woefully ignorant of what those numbers actually mean (assuming he's not outright dishonest).  He writes that this means there are more persons with autism than Jews, Japanese Americans and that these numbers show that there are more autistic people than anyone every realized.  As I've mentioned in a previous post.  The 1 in 68 number was based on just one survey the CDC did in various select parts of the United States.  There was a huge range of numbers in various parts of the United States with Alabama being by far the lowest and New Jersey and Utah being much higher.  The number only applied to persons born in the year 2002.  Anyone who reads the CDC report itself will see the 1 in 68 kids were not formally assessed.  If there was something in a school record suggesting the child had autism they were counted in the survey without a diagnosis.

Robison makes the apples and hurricanes comparison between who should advocate for Jewish people or native Americans with who should advocate for autistics, stating autistics themselves.  Yet autism is a disease/disability of childhood and though there are autistic adults many autistic people are still children so in the meantime their parents advocate for them.  To date, five individuals purported to be on the spectrum have served on the IACC.  All of them have opposed curing autism.  Not one person on the spectrum who is in favor of a cure or finding treatments to alleviate autism has been appointed, in spite of the fact that Roger Kulp has expressed an interest in the position.  At one time, Robison claimed to be in favor of research to "remediate" the debilitating aspects of autism (whatever that means).  Since he's left the science advisory board of autism speaks, his views have become far more radically neurodiverse (I don't know if this is coincidence or not) and he now states that the disabling aspects of autism are largely a construct of society and if the correct accommodations were made autism would not be a disability.  He claims that 1 in 68 persons had autism in the 19th century and before, but somehow they escaped detection as society was so different, yet fails to explain, how someone who could not speak, threw a temper tantrum and was totally impaired from self-stimulation would have been able to hold a job as a blacksmith for example. 

Let me make an analogy to counter Robison's.  As far as I know, we don't have a public citizen member board of the federal government for cancer, diabetes, schizophrenia or any other disease you could name.  We certainly don't have someone who did not complete the tenth grade in school serve on any of those boards.  Steven Jobs was a highly talented individual who contributed great innovations to society.  He was afflicted with pancreatic cancer yet did not serve on any scientific advisory boards to find treatments for cancer.  People with infections don't serve on boards to treat antibiotics.  If Robison can name me any Ph.D. scientist on the spectrum who is capable of doing research to help autism, then maybe i'll buy at least part of his argument and I would support that person in their endeavors if it would help find a cure.

Robison states that people saying they want a cure for autism is a slap in the face for everyone who celebrates the gifts autism gives us, but fails to mention any.  I feel Robison's speech and his anti-cure rhetoric are a slap in the face to me and any other individual who wishes their autism or loved one's autism could be cured including me. 

He states that everyone who has autism suffers.  Well, John, I have news for you.  Every human being, autistic and non-autistic, handicapped and non-handicapped has suffered.  It would be an anomolous human being who has not suffered.  He cites some of the health problems that autistics have including suicide or depression and claims he's at risk for them every day.  For him to imply he has any of the problems a typical person with autism has is ludicrous.  It is highly unlikely someone of his functioning level would be at risk for the same types of health problems others on the spectrum are.  That is assuming Robison is on the spectrum at all. I'm still trying to understand how someone who has stated they have no disability at all merits a diagnosis. 

Robison admits that he has never experienced what it is like for a person not to be able to speak.  Well, I experienced it, though I don't specifically remember what it is like.  I did not recover my speech until close to age five, but I was still nonverbal. 

Robison defends individuals on the spectrum who claim the word cure equates with getting rid of autistic people and says we should not take that attitude because they would be offended by it.  Well, I'm offended by Robison's attitude and their attitude.  If someone is so irrational they actually believe that curing a neurologic condition means getting rid of people that is their problem and I hope no scientist will take what Robison says on that matter seriously. 

It is indeed unfortunate that IMFAR, an organization that should be devoted to research on how to mitigate and ultimately cure autism would give this individual a platform on which to speak.

Thursday, May 22, 2014

Barack Obama, you sure do have your nerve

On reading Manuel Casanova's Cortical Chauvinism blog today, I see that Barack Obama has written a letter concerning autism. Here's the letter, addressed to attendees of the International Meeting for Autism Research, in full:  

The White House Washington May 7, 2014 

I send greeting to all those attending the International Meeting for Autism Research (IMFAR). Millions around the world live on the autism spectrum, including 1 out of every 68 American children. Those affected are our family members and friends, colleagues and neighbors. We all can play a roe in supporting those living on the autism spectrum and their loved ones. Occasions like the IMFAR provide a special opportunity to share the latest findings in the science of autism, which have the potential to improve the quality of life for those with autism. By uniting researchers from across the globe, events like this pave the way for breakthroughs in detection, intervention, and education that can help those affected better prepare for their bright future. I thank the scientists and medical professionals advancing our understanding of the autism spectrum. I am deeply grateful to all those who dedicate themselves to promoting the health and well-being of others, and I wish everyone gathered all the best for a productive, rewarding event. 

Barack Obama

All I can say to the POTUS in response to this letter is that he sure does have his nerve writing this.

First off, the 1 out of 68 of every American children is an inaccurate statement.  That number only refers to the year 2002 birth cohort that the CDC's prevalence reports recently published.  Even in this cohort, it is highly unlikely that every one of those kids was autistic.  They did not have to have a formal diagnosis to be counted in this survey.  A variety of records were reviewed, including school records.  If there was anything that suggested the child had autism, they were counted in the survey.  They did not enlist clinicians to confirm the child had autism.

The really nervy thing about this letter is the fact that Mr. Obama has appointed so many members of the neurodiversity movement to various government posts and the funding of their research.  He appointed someone 21 years old who has said a cure for autism would be morally reprehensible.  This individual has never worked a day in his life and he stated that one of the solutions for reducing unemployment in autistics is to eliminate social pleasantry as a criteria for hiring and evaluating a person's job performance.  He appointed a high school dropout to both serve on the IACC as well as review scientific grants for the NIMH.  This person has said that to a large extent the disability of autism is just a social construct.  He also stated that he believes the 4:1 male to female ratio of autistics is the result of parents having sons as their first borns and daughters not having a chance to catch up.  He's also appointed an individual who has compared parents who want a cure for autism to the Ku Klux Klan.
He funds the research of rogue scientist Morton Gernsbacher who has opposed a cure for autism and has stated that rhetoric such as 'suffering from autism' is offensive

Barack Obama, I realize you'll never read this, but I just want to say to anyone who may happen to read this you sure do have a lot of nerve writing this letter.  You don't care that  many persons on the spectrum such as myself and members of their families suffer tremendously from this affliction.