Thursday, January 21, 2016

Ari Ne'eman's hyperbolic take of In a different Key

The hot new autism book that has recently come out is In a Different Key by Caren Zucker  and John Donvan.  It has some similarities to Steve Silberman's neurotribes in that they both give a lengthy description of the history of autism.  Where they differ is that the latter portrays the neurodiversity in a sympathetic light, while the former treats it with some disdain.

About ten pages of this nearly 600 page tome are devoted to Ari Ne'eman.  Ne'eman published a piece trying to refute what the authors have to say about him and the ND movement.

He starts off his diatribe by playing the murder card, one of neurodiversity's dirtiest tricks, claiming that Donvan and Zuckerberg on page 142 of their book tried to justify the murder of an autistic boy.  They never justified his murder, only stating what the man's defense attorney gave as the rationale that he had killed the boy to put him out of his misery, followed by a distorted logic while profoundly depressed.  His lawyer argued for a temporary insanity defense.  The jury didn't buy it and he was convicted and sentenced to life in prison.  The authors then go on to quote a woman who wrote an article where she only said that the father was not acting out of selfishness as she believed the prosecuting attorney had implied, but had snapped, though she realized this murder could never be justified.  At no time do the authors defend the murder.  Of course, anyone interested can go to page 142 of the book and judge for themselves.

Ne'eman writes how parents can never understand autism first hand because they don't experience what their kids do.  I'm very curious how Ne'eman has experienced autism, how it has debilitated him in any way.  I realize he's stated that he's attended special education at various times for unclear reasons.  That he was bullied for being different and would scratch his face out of frustration til it bled.  He's also stated that he has a sensitivity to velvet textures, has a face recognition deficit, and in a recent blog post commented on a sensitivity to static from a microphone.  Other than that, I have no idea how his autism spectrum disorder has disabled him in any way or how he can claim to relate to the experiences of having autism that I, Roger Kulp, and others have who are truly debilitated by their condition.  He seems evasive when he's asked about this by reporters as Donvan and Zucker correctly stated in their book.  

Next Ne'eman writes:    And far from being about blaming parents, the neurodiversity movement is about shifting the conversation to the real needs of autistic people — to the benefit of parents and autistic children and adults alike.

In fact, neurodiversity has always been about blaming the parents, going back to Jim Sinclair's Don't Mourn for Us speech where he castigates parents for wishing that they did not have an autistic child.  Not to mention Marc Rosen's calling my mother overbearing.  Some of the nastiest members of ND have stated that the reason for my autistic disability is that I had a mother who taught me to hate myself and calling her a witch and a yapping shrew.  Not to mention one individual's statement in the comments section of the Newsweek profile about me that one of the greatest threats to the autism community was my mother.  As far as I know, all of these individuals are members in good standing at ASAN and their membership dues helped pay Ne'eman's $71,000 annual salary in 2013.

Ne'eman also disputes Zucker and Donvan's statement that neurodiversity argues that autism is not essentially a disability, though this is something he's repeatedly stated over the years.

In an NPR interview in 2008, Ne'eman stated:  We're disabled by society, What disables us is, for instance, an education system that's only designed to meet the needs of one kind of student, or societal prejudices which say that autistic people will never be able to live in a community.

Though Ne'eman does not explicitly state here that autism is not a disability, most people would take this statement to believe that he's saying autism is not essentially a disability, because Ne'eman implies that with acceptance and the proper accommodations autism would cease to be a disabling condition.

As older time readers of Gadfly remember, Ne'eman's words from several years ago, which I published after he denied on Lisa Jo Rudy's blog that he'd ever said autism wasn't a disability:

 We see the world in a different way than our neurotypical peers (neurotypical is a word in the autistic community meaning those of the majority neurology). This does not imply a defect, but merely a difference — one that we have just the same right to as those of a different race, nationality or religion.The belief was that anyone society labeled "disabled" could only go so far. Sadly, these misconceptions had the potential to become self-fulfilling prophecies. When the expectation is that people of a certain type can only reach so far, they are not provided with the same challenges and opportunities that educators give mainstreamed students....
In the last paragraph Ne'eman writes:

We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not disability and someday, I hope, the world will recognize that those who think in different ways should be welcomed.

A reasonable person reading these words would seem to get the idea that Ne'eman is stating that autism essentially  is not a disability.

We can also go back further in time to a statement Ne'eman wrote some years ago about whether or not Asperger's (which he's been diagnosed with rather than autism per se) is a disability:

 I happened to stumble upon your entry on a Yahoo Search for Asperger's and I'm glad I did. As a teen with Asperger's, I strongly suggest you tell your son as soon as possible. The fact is he is different. What's more, this is not a bad thing. Any individual who accomplishes anything is different. It's his right and his requirement to know who he is, and what makes him different from those around him. Furthermore,Asperger's Syndrome is hardly what one would think of as a disability. I recommend you take a look at Norm Ledgin's "Diagnosing Jefferson", a wonderful book that suggests that one of the founders of our nation had Asperger's. As I and the book can attest, it is not in spite of but because of the characteristics that set us apart from others that "Aspies", as the popular nickname goes, have the ability to do great things.

The day will come when Asperger's will be recognized for what it truly is: a difference, not a disability, and in many ways an advantage. I think you owe it to your son to talk to him about who he is and help him succeed as that person, not pretend (or worse yet, force him to pretend) to be someone else. I'm somewhat notably successful for my age and as a result I've occasionally been asked to speak to newly diagnosed "Aspies" and at a few conferences about Asperger's and special education in general. One of the things I've always tried to stress is the vital importance of recognizing the advantages of difference and not falling into the trap so many do that different is defective.

I haven't bothered to provide the links, but I think the one to the last statement about Asperger's is still there and can be found in the blog post where I first posted this.  ASAN deleted the article on their web page in which the difference is not disability statement appeared at the time I first blogged about it and the senate was still considering Ne'eman's appointment to the national council on disabilities.

Based on these statements, I would certainly concur with Donvan and Zucker that Ne'eman has stated that autism is not essentially a disability and this has been his belief all along.

Are autistic behaviors considered by some to be pathologic adaptive in nature?  Ne'eman writes:

Many unusual autistic behaviors are important and adaptive in nature. Hand flapping, rocking, and other forms of stimming serve as important means of emotional and sensory regulation for autistic 


These behaviors cause attention to be drawn to the individual resulting in bullying and discrimination in employment.  While I agree that the bullying and discrimination should not exist, we still have to conform to society, so in that sense the behaviors are maladaptive.  My twiddling (self stim) has made my life miserable.  It prevents me from getting things done during the day and is incapacitating.  It is due to a serious organic brain impairment and I wish something could be done about it.

I don't know anything about the run-in that Ne'eman had with Peter and Elizabeth Bell except for what I read in In a Different Key and what Ne'eman wrote about it in this article.  However, I only hold Pete Bell in disdain for advocating for funding of Alex Plank's and Cubby Robison's Autism Talk TV when he was an executive at autism speaks, even though his son will likely never function at the level of Ne'eman, Plank, or Robison junior.  If the Bells are still unhappy with the neurodiversity movement, I see them as part of the problem rather than the solution. 

As the neurodiversity movement becomes more prominent, I do see them as a threat toward advancement in the science and research that could lead to a greater understanding and treatments that could help mitigate if not cure autism at some future date.  I've now read Donvan's and Zucker's book and I'm glad they question the neurodiversity movement and I hope more in the media will continue to do so, since not too many people read my piddling Gadfly blog where I've been trying to take them on for years.

Thursday, January 7, 2016

Will Hillary Clinton's autism policy proposals fly?

A couple of days ago, the democratic party's leading contender, Hillary Clinton, announced a sweeping range of policy recommendations for autism spectrum disorders she says she'll attempt to implement if she's elected to the white house.  She apparently had a conference call with Ari Ne'eman and a variety of other people.  Interestingly enough, many of these recommendations reflect issues that Ne'eman's organization, ASAN, has tried to implement.  I'd like to touch upon some of them.

She recommends a study to assess autism prevalence in adults similar to what the CDC does for eight-year-old children every two years under the Autism and developmentally disabilities monitoring network which was passed when the CARES act was still the combating autism act.  The ADDM spends millions of dollars a year to produce these prevalence findings.  They track areas, just in specified areas of the country and not the entire country.  Why these specific areas are chosen is unclear.  Every two years they track different counties and cities within the same state and often change the geographical areas, so the prevalence figures have little value.  Also, it is unclear to Gadfly how the CDC prevalence monitoring helps any autistic children achieve better educational goals or occupational goals when they become adults.  How are all these people served by the millions that is spent on these prevalence studies?  The cost is particularly sensitive in that the majority of autistic can't work, can't get on disability and are either supported by their parents or live in abject poverty.   

The CDC searches special education schools and clinics where eight-year-old children are likely to present.  They won't have this luxury in adults which makes studying the adult prevalence so much more difficult.  Contrary to what the age of autism people and others who believe there's an autism epidemic that just happened in recent years in younger persons, this is the likely reason similar prevalence numbers haven't been found in older people.  Or perhaps she wants to do something like the Brugha study whose methodology was highly questionable.  It was based on a modified version of Baron-Cohen's autism quotient survey which turned out to be a poor screen for autism.  They then found only 19 people and on that made an "educated guess" that 1% of the entire adult British population had an autism spectrum disorder.  Not to mention the fact that this screening tool is only designed for higher functioning autistics and not ones who are nonverbal or have an intellectual disability.  Finding adult autism prevalence in adults is really like looking for a needle in a haystack.  I don't believe it is money well spent when many autistics live in poverty and there's a shortage of funding for general services that help parents care for their autistic children.

Hillary Clinton wants to help find jobs for autistic people vis a vis legislation such as the American Disabilities Act and transition plans and the demonstration programs for which legislation has already been introduced by some members of congress.  However, she neglects to mention how autistic people who are disabled by their condition would be amenable to be trained for various occupations to make them more employable.  Even if taxpayer or private money were available, how could it be implemented.  Most autistic people would have difficulty with schooling or learning a trade due to their disability.  Of course, Clinton takes a card out of Laurent Mottron's bag of tricks, claiming they have all these talents and abilities that will make them marketable to employers while neglecting to cite any references or proof.

The Americans with Disabilities act only requires employers to give Reasonable accommodations to disabled employees.  Tolerating tantruming, meltdowns and disruptive behavior that would occur at a job by a variety of autistic people are not reasonable accommodations.   in one case a medical resident stating that acceptance and understanding of his asperger's was a reasonable accommodation did not prevail in federal court.  As was  the case of a man with an ASD whose request for acceptance of his loud voice and asking customers personal questions. 

Hillary Clinton also wants to legislate bullying out of existence.  That's never going to happen.  There are always going to be kids who bully other kids.  It's a shame, but there's no easy and simplistic way you're going to be able to stop it.  Of course, I agree that rather than the autistic child being segregated from their peers because of bullying, that the bullies should be segregated and sent to a reform school where they're locked up for their misdeeds.  Of course, there's no more chance of that ever happening as there is of a cure for autism being found in my lifetime.  Of course Mrs. Clinton takes advice from ASAN, so I suppose she doesn't want to do anything about Clay Adams, Phil Gluyas, Marc Rosen, and other neurodiversity proponents who bully and harass and libel me over the internet.  How dare she listen to any suggestions from Ari Ne'eman who accepted membership dues and donations from these people who helped pay his $71,000 salary in 2013.  

Much to neurodiversity's chagrin, one of the things that Mrs. Clinton did recommend was continuing projects like Autism Speaks Mssng campaign to search for genes that might figure in the etiology of autism. 

However, she fails to give policy recommendations on many fronts.  What of autistic people who can't find mates?  What does Mrs. Clinton plan to do about that?  What about the fact that the vast majority of autistics who have a seriously compromised ability to work are denied disability.  If they get it at all, they have a protracted court battle that goes on for years.  Why won't she mention this? 

Worst of all, she neglected to mention one word about autism prevention or ultimately finding a cure for autism.  It would seem Mrs. Clinton is another politician who unfortunately has been influenced by neurodiversity advocates. 

Autism is not a political or legislative problem.  It is a developmental disability.  We need scientific funding and not politics to help solve the problems of autism. 

Will Mrs. Clinton's policy recommendations fly?  Gadfly doesn't think so. 

Tuesday, January 5, 2016

Where does Silberman get his info on autism genetic research?

In the continued saga of Steve Silberman strangeness, I just happened to be reading a piece written a few months ago by this person who is now the most prominent popular writer on autism related matters.  The piece has (at least to me) the offensive title Autism is a valuable part of humanity's genetic legacy. The phrase that stands out most prominently to me in the article is this:

 In recent years, researchers have determined that most cases of autism are not rooted in rare de novo mutations but in very old genes that are shared widely in the general population while being concentrated more in certain families than others. 

Since Silberman neglected to cite any source for this, I'm curious where he got this information since it completely contradicts everything that I've read about autism genetic research that's taken place in the last eight years or so.

Jonathan Sebat for instance has published research showing a significant association between autism and de novo mutations.  Dr. Sebat states that he expects that the actual cases of de novo mutations is in reality substantially higher than what he found since the techniques for identifying these genetic abnormalities are still not advanced enough to find spontaneous mutations on the genome that might be even smaller than those already identified.

A study done in Israel several years ago showed that children of fathers over the age of forty were nearly six times as likely to have an autism spectrum disorder than the offspring of younger fathers.  It was considered probable that this was the result of de novo mutations in the sperm of the older dads. 

A very recent study done at Cold Harbor Springs lab has suggested that probably half of all cases of autism are caused by rare de novo mutations on genes that have a particular vulnerability and that these are not old genes as Silberman claims, but are expunged rapidly from the population since autistic people rarely have children.  Previous research done by this group showed that some of these de novo mutations were carried by the mothers who had a protective effect against autism but their children (usually boys) inherited them in an autosomal dominant fashion.

This is just a small sampling of articles that suggest rare de novo mutations not found in the general population are a significant factor in autism spectrum disorders.   

The Slate article was apparently excerpted from the Neurotribes book.  It's been a while since I've read neurotribes and I can't recall if Silberman wrote this in the book or if he gave any references to any actual genetic studies that support his statement.   Since there's been so much science that contradicts what he says, I'm wondering if this research exists, could Silberman or anyone else cite any references since I can't seem to find any on the internet.  Maybe there's something out there, but it would seem that Silberman has made statements on the genetics of autism that have no factual basis as was the case with his statements on Kanner's work.  Even if there were such research, Silberman would have to explain why he said what he said in light of  recent research that has found that a significant number of autism cases are the result of de novo mutations.