Wednesday, August 26, 2015

Silberman's play of the refrigerator mother card and my one star review of neurotribes

Steve Silberman's neurotribes has just come out and is getting a lot of media hype and so far it's a huge commercial success.  I've been waiting for years to read this book and now that I have I can blog about it.

First off, I said that I wouldn't judge a book by its cover though I did have some expectations as to what it would be based on the company the author keeps and the variety of things that he's written on the internet.  I'd like to say I couldn't help having some preconceptions about the book and I have to concede that they were at least partially wrong.  It was not the neurodiversity preachathon that I expected it to be nor did promoting the assortive mating theory play a prominent role in the book which Silberman wrote about in his Wired magazine article.  Nor was it as offensive as I'd thought it would be.  Though some parts of the book were offensive and there were plenty of other problems with it (which I'll get to in due course) that merited a one star review on amazon,   Now that I've admitted some of my prejudgements were wrong, I'd like to write some commentary on the book that I could not cover alone in my scathing one star review.

Though Silberman's writing was very readable, the book was arthritic tortoise in its pacing.  Silberman writes a lot of minutiae and back story in each segment which was extremely plodding and made for some dull reading and took an eternity to really cut to the chase of his topics.  It was also very verbose and I believe a good editor (which apparently he didn't have at avery penguin or in the process of writing the book) would have cut it by about 50% as he could have expressed ideas in about half the words he wrote.  The writing is also very verbose and long-winded.  The book is also poorly organized as it flits from one arcane topic to another with no arbitrary order he goes from talking about Wakefield or Rimland for a while (giving superfluous backstory on each subject that causes the book to drag) then out of the blue goes on to nonsequiters about IT individuals and what they did with computers which would seem to have no relevance to the subject matter, except he wants to imply that these persons are autistic or at least have autistic traits and goes on about these people.

He first writes about the refrigerator mother theories of the etiology of autism that were espoused by Kanner, Bettelheim and other lesser known individuals (including my own psychoanalyst).  He writes from the perspective of how historically undesirable they are and then tries to suggest that we've evolved to neurodiversity which is more desirable.

I'm curious as to whether or not Silberman could have interviewed a middle aged adult who had actually experienced this era first-hand.  I personally fit this bill.  As I've written before on this blog, I was in psychoanalysis for more than ten years by a therapist who studied under Anna Freud who suggested among other things that the etiology of my autism was due to castration anxiety, due to the fact that I had a younger sister and I must have seen her nude and noted her lack of a male organ.  She stated I believed I thought my parents planned to be like Lorena Bobbit and this was in part the cause of the etiology of my problems.  This was also traumatic to my parents.

Ironically, though the author implies that in the twenty-first century, we've evolved from this bad history to the concept of neurodiversity which he embraces wholeheartedly not only in this book but in various other places on the internet as well in the five years he spent writing this treatise.

The truth is neurodiversity is in part a twenty-first century incarnation of this sad period with some of its less savory members saying the reason I'm depressed over my autism is that I had a horrible domineering mother who taught me to hate myself.  Others have said this is where my disability from autism comes from.  A few of these people have called my mother a witch and a yapping shrew.

Others have not resorted to name calling but in the case of John Elder Robison have stated that parents might want to do a treatment just for their own convenience and not to help their child as he stated on Harold Doherty's blog.  Others have equated a cure to intolerance, others have said that autistic parents don't give a f*** about their children and wish they'd drop dead.  Others have equated parents of autistic children or certain charitable autistic organizations with the Ku Klux Klan and parents of autistic people as akin to members of the KKK who are forced to raise black children.  These include IACC member Noah Britton.

Silberman also does not come right out and say that Henry Cavendish and other notable scientists had autism, but certainly implies it and if you read between the lines implies autistic type thinking was responsible for many scientific discoveries and inventions.  He is not a clinician and Cavendish died nearly 150 years before he was born, so i'm rather perplexed as to how the author can come to these conclusions.  It's true Cavendish was very shy and eccentric but obviously he did not have executive functioning problems of an autistic.  

The author repeated his offensive statement (that i've commented on previously) that the difference between autism and a non-handicapped person is analogous to the difference between a linux and a windows operating system that just work differently.  A more accurate analogy would be between a working computer that runs windows and a computer that constantly crashes or has constant blue screens of death and shuts down due to overheating or having malfunctioning memory chips.

Another offensive comment is implying that the problems with autism come from oppression rather than disability as was the case with Jews at one time (and possibly still in some circumstances).  He states in this analogy that autistics are a relevant minority group as there are as many autistics as Jews in the U.S.A.  according to one source at least 2.2% of Americans are Jewish.  Even if you go by the CDC's 1 in 68 figure (which many including Silberman himself misrepresent) and assume this figure applies to people in all age groups,  there are still more Jews than autistics in the U.S.A.  The 1 in 68 figure only applied to one birth cohort in 2002 when they were eight years old.  This assumes that the prevalence rate is the same in all age groups for which there is no proof.  The CDC and others have changing prevalence figures all the time based on changing definitions of autism and the locations where they actually look for autistics which change every two years.  The 2.2-3% Jewish figure has held up over time for decades.  As a member of both groups (I'm both autistic and Jewish) I not only find Silberman's analogy offensive but it is outright wrong.

In the last chapter he trivializes mark rimland's very serious handicaps by stating that the support he gets from family and community are far better for him than a cure would be.  I've met mark rimland at an autism conference and he is quite handicapped.  He'll never be able to take care of himself and will need lifelong aides to care for his every need and take care of him constantly.  If his name were Mark Smith or Mark Jones and his father had not been a well-known figure in the autism community, he'd never have been able to promote his artwork and he would never have received the support that Silberman cites.

Silberman also lauds specilisterne as a solution for the employment problems of autistics though it was only able to exist through subsidies from the socialist government of denmark and grants from the state of delaware and has never been able to offer real and sustainable revenue and employment of autistic people and has lost money. 

He also claims there are all sort of services and accommodations that can help autistic people and that we should not be spending time on scientific research to help autistic people.  For the most part, he's vague as to what these are or how they can be workable.  I contend that no accommodations will help autistics get around the disabling aspects of their condition.

Most of the autistic people Silberman wrote about in his book are at the mildest end of the spectrum (assuming they're autistic at all).

It's sad that Silberman's book will inevitably be such a commercial success and get all the notoriety it continues to receive and that people will get the wrong idea about autism and what a horrible disability it truly is and how much we need to do scientific research to find the cause, find viable treatments and ultimately cure this devastating disease. 

Tuesday, June 16, 2015

Is Ari Ne'eman qualified to give input on autism research?

In a recent interview with the simons foundation , Ari Ne'eman advocated for having autistic persons give input on research into autism. We already have the interagency autism coordinating committee which is packed by members of the neurodiversity movement who claim to be on the autism spectrum yet apparently have little or minimal disability.   To date, not a single pro-cure, anti-neurodiversity person on the spectrum has been appointed to this board.  John Robison has served on various research committees in an advisory capacity and stated he was on the board of the CDC's ADDM, which tracks the prevalence of autism in the U.S.  He also claimed that he was asked by the Harvard TMS group to assist in formulating the TMS experiments they did in which he was a research subject.  This is in spite of the fact that he dropped out of high school in the tenth grade.

In the article, Ne'eman mentioned that as African Americans and Hispanics are involved in research in the problems these groups face that this should apply to persons with autism (Gadfly is not using first person language that ND's insist upon)  Gadfly feels this is a bad comparison as race does not disable a person as autism does.

He also mentioned that there are deaf people who participate in research on deaf people.  What about other medical conditions?  Do diabetics insist that they give input into scientific research on diabetes, even if they're not formally trained molecular biologists.  Do people who've had infections sit on FDA boards and decide which antibiotics should be approved?  Though Stephen Jobs was a brilliant man who accomplished much in his life, he didn't spend time giving input on cancer research.  Why is autism different?

Ne'eman has a bachelors degree in political science.  Though far more educated than John Elder Robison, Gadfly wonders what he knows about research methodology, statistical analysis and what other qualifications he has to analyze or interpret statistical data.  One of the lines from the Simons Foundation article is particularly interesting:

The goal is to boost the research’s real-world impact by getting input from those most affected by it

Does this mean that Ne'eman is qualified.  As far as I can tell, Ne'eman's only current disability is that he's overly sensitive to velvet texture.  Other than that, I don't understand how he is disabled let alone being one of those most affected by autism.  According to this sentence, only people who are completely nonverbal, have IQs less than 30 and are still in diapers and under some sort of institutional care are the only ones who should be giving this input to the government.  Will Ne'eman include these?  Is this who the government is going to put on the IACC and on these scientific advisory boards next?  With all the crazy things that the government has done with autism, I suppose nothing should surprise me. 

Friday, May 1, 2015

The Autism Job Club: Don't judge a book by its cover

I just found out about a new book called The Autism Job Club on a post on The Age of Autism.This book is promoted there and elsewhere as a book that can actually help people on the spectrum find jobs.  As soon as I found out about this book, I felt I had to go to the local bookstore and purchase a copy and read it.  I spent a good portion of my day yesterday doing just that. 

One of the authors has an autistic son now in his early twenties and writes about the frustration in helping his son find work.  He also talks about an actual club of jobseekers in the San Francisco area where people on the spectrum brainstorm about employment strategies.  None of the clubs members have actual jobs but most of them have their own businesses which appear to be floundering.  Two people have a handyman business, one female member has a pet sitting business, etc. 

After his son was fired from multiple jobs, the author finally found someone sympathetic to people on the spectrum who employs his son part-time as an office worker and apparently does not mind that he makes excessive mistakes, something Gadfly is skeptical about.

The book also mentions certain members of the neurodiversity movement and seems to have a somewhat pro-neurodiversity attitude.

He talks about places such as Wal-Mart and Best Buy who have made an active effort to employ autistic people.

Also mentioned are Specialistirne and other startups that were designed to employ autistic people.  Interestingly, the author writes about how Specialistirne was subsidized by the Danish government  and how they tried to start up in the USA, funded by a grant, but couldn't get anywhere.  Other software testing firms that started with the intent of helping autistic people work faced similar challenges. 

The book talks about the stereotypes of autistic people having strong attention to details, having technical, math or computer aptitudes but at the same time, gives examples of people with autism who are fired due to making excessive errors due to poor concentration as well as the problems with the tech firms I discussed above.  They also say that autistic people might make good employees because of loyalty but don't show any evidence that this is anything more than a stereotype. 

They also discuss the jobs that Freddie Mac has offered through the autistic self advocacy network's influence.  However, these are for all very high functioning autistics or members of neurodiversity who are possibly self diagnosed at least in some cases. 

Other than disclosure, the book really offers no solutions to help autistic people find and keep work.  The one time I tried disclosure it did not help me.  Other jobs I have kept for a while without disclosure.  I don't believe disclosure is very helpful.  It might be hard to avoid in some situations, but I don't believe it will really make a difference in helping an autistic person find and keep a job.  If the person has problems that make them an unsatisfactory employee, behavior or excessive errors, it is not going to make the employer sympathetic and want to keep them on.  If you disclose your disability at a job, it could well prejudice you. 

The book also gives some dry and technical minutia about the employment markets and changes that have nothing to do with autism. 

The lessons or moral is really that there are no easy quick fix answers to the problems of unemployment among autistic people and that you can't judge a book by its cover. 

Sunday, April 19, 2015

The Rise and Fall of Wrongplanet.net

Wrongplanet.net is a website started in 2006 that grew by leaps and bounds over a several year period.  At one time they stated in their titlebar that autism equals good.  They've also banned certain members, including your humble blogger, who wrote posts disagreeing with tenets of the neurodiversity movement or making statements that having an autism spectrum disorder might not be such a good thing after all.  The members seem to have a penchant for abuse and name calling of those whose opinions are different from theirs.  Your humble blogger has been labeled a minimally educated sociopath, an asshole, and an intellectual lightweight and other names by some of the denizens of this august URL.

The website has also been mired in controversy from time to time.  First there was the William Freund case where he posted that he was going to hurt someone and apparently Wrongplanet neglected to notify authorities and he killed two people.  There was also another member, Hans Peterson, who went out and murdered his dermatologist.  Another member named "Cephalopod" indicated that he might go out and shoot and murder as many neurotypicals as he could.  After being reported to the FBI, he was apparently interviewed by authorities in Switzerland where he apparently resided.

Some of the members were appalled when the founder Alex Plank accepted funding from their nemesis Autism Speaks for his now defunct Autism Talk TV series.

Gadfly wonders if this could have affected Wrongplanet.net's traffic.  Perhaps it has.  Yuval Levental, one of my readers, has alerted me to the fact that the WP's traffic has actually significantly declined in the past two years, as shown by the stats on this website.

Yuval has apparently pondered this also and wondered how a typical reader of wrongplanet.net might view the situation.  He created this rather amusing tongue-in-cheek video that might better explain the situation.  I wanted to embed the video here, but was not able to do it where it included the subtitles that Yuval added.  But you can view it from the above link. 

Monday, March 30, 2015

Autistic self advocacy Network's new fundraising campaign

I see that the Autistic self Advocacy Network has started a new fundraising campaign. They give the potential donor three choices of causes to donate to.

The first is an autism campus inclusion summer leadership training program.  The apparent purpose of this is to train and indoctrinate college students in organizing others to spread the neurodiversity message.  The Mitsubishi corporation has already funded this endeavor of ASAN's in the past.  According to a post written by The canary party, an offshot of the anti-vax movement and one of the few organizations that actively opposes the neurodiversity movement, having a formal diagnosis of autism is not required for a college student to participate in this program. Only self-identification of being on the autism spectrum is required. We also have this announcement of the program by ASAN a few years back where they stated:  
This is an exciting move forward for ASAN and we hope it can be an exciting move forward for you. If you are a current college undergraduate student who identifies on the Autism Spectrum, including Autistic Disorder, Asperger's Syndrome, and Pervasive Developmental Disorder Not Otherwise Specified, with a strong interest in the Disability Rights and Autistic Rights movements, we invite you to apply for this leadership training.

   Gadfly is intrigued by the words who identifies.  Does this mean that any Tom, Dick, or Harry (or Harriet) can just diagnose themselves with autism and be eligible for the program?   There have been some questions in the past as to whether or not some of the more prominent members of ASAN are self-diagnosed.  One of the commenters on this blog claimed that Paula Durbin Westby told him in 2007 that she was self-diagnosed.  Of course, I have no way of verifying this claim or any other allegations of members of ASAN self-diagnosing themselves, however, this program seems (at least to me) to suggest that there is evidence that ASAN does in fact encourage self-diagnosis.

The second choice is to donate to ASAN's Policy advocacy arm.  Here they are trying to encourage policy against restraint and seclusion, discrimination in organ transplantation and paying subminimum wage to disabled people.

Though restraining and secluding autistic children may sound like a rights violation, it is actually for their own protection.  There have been several reports of autistic children wandering and being hit by cars and accidental drownings.  ASAN does not seem to care or have any alternative for preventing these tragic deaths, except to claim that if neurodiversity were implemented, we could find out what is causing children to wander and deal with it.  Of course, they provide no evidence of this.

As far as organ transplantation is concerned the sad truth is that there are only a finite number of hearts, kidneys, etcetera to go around and the demand for organ transplantation exceeds the supply.  If every autistic person who needed a new heart or kidney was granted one, some other person would be denied and they would die.  This could be an example of reverse discrimination.  In order for organ transplantation to be effective and save or prolong the life of the recipient, a strict regimen of medication, diet, etc. must be adhered to.  Sometimes a disabled person might not be able to do this and they'll end up dying or wasting the organ that could have gone to someone else who would follow the regimen and be able to best utilize this scarce resource.  From what I've read cadavaric transplantation may be underutilized, but I don't see Ari Ne'eman crusading for this.  One of the problems here is that the hospital or ethics committee who rejected the candidate for transplantation is barred by the HIPPA law from telling their side of the story as it would violate patient confidentiality.  I wish there were a solution where every person who needed an organ transplant could get one but unfortunately there is not one.  Gadfly would be at the front of the line in protest, if someone were denying someone a needed life saving treatment just because they happened to be prejudiced against autistic persons.  ASAN has failed miserably (at least in my opinion) to prove that this is the case.

In terms of subminimum wage laws, most of the organizations that pay subminimum wages are 501(c)'s such as the Goodwill who are just creating makework for people with disabilities who would not have anything to do.  Getting rid of these might actually be a good thing as Gadfly is not really a fan of sheltered workshops for a variety of reasons.  As far as the profit sector goes, legally they can pay a disabled person subminimum wage, but there is a burdensome bureaucratic process the employer must go through and much paperwork and proof has to be provided to show the handicapped person is not worth $8.00 an hour (or whatever the minimum wage is).  I suspect most employers would not find this worth their while and they'd just hire a non-handicapped person and pay them minimum wage.   I might agree with ASAN that the subminimum wage law for disabled people should be done away with.  However, the problem is that if this happened, Goodwill and other organizations would get rid of the sheltered workshops and the employers would just hire a non-disabled person for the minimum wage job. It would do nothing to improve employment opportunities for persons on the spectrum.

The last program you can donate to is something that combats stereotypes and misinformation about autism being a tragedy or a burden to families.  I believe that it is ASAN that fosters stereotypes and misinformation about autistic people.  One supporter stated that those who disagree with them should be shot to death or turned into cat food.  ASAN leads to stereotypes of  autistic people being abusive bullies and hate mongers who end up insulting someone's mother if they have no other way of winning an argument.  We are not monsters but I believe ASAN makes us look like monsters.  

For these reasons, I don't believe that ASAN is a cause worth donating to and I hope anyone who reads this post will find some other more worthwhile charity.  Somehow I doubt I'll convince many people. 

Monday, March 16, 2015

Autism daily newscast publishes Gadfly

Here's an article I wrote  about neurodiversity for the autism daily newscast.

Wednesday, March 11, 2015

84% of ASAN's 2013 revenue goes for overhead

I've waited awhile for the Autistic Self Advocacy Network's 2013 form 990, the mandatory IRS tax form that non-profits are required to fill out and make available to the general public.  I've finally found a website that has the info.  We see that in 2013 ASAN made $452,643 in revenue.  Out of that amount $378,264 went to pay, salaries, rent and other overhead costs including Ari Ne'eman's $71,000 annual salary.  He again raised his salary, this time by about 10%.  Of course this is a far more modest increase than that of the 2011-2012 period, where Ne'eman raised his own salary 62% in one year from $40,000 to $65,000.  In spite of the fact that ASAN had a net fundraising loss in 2012 of nearly $15,000.  We see that nearly half of their revenue covered salaries, benefits and payroll taxes.  We see that they had just under $75,000 in revenue minus expenses.  It is unclear where this money is going, whether it is sitting in the bank as reserves.

In terms of ASAN's service accomplishments, they cite research making medical care more accessible to persons on the spectrum.  Far less was spent on this than on Ne'eman's salary.

They spent nearly a quarter of a million dollars on outreach and advocacy and educating people on the disabilities movement in regards to autism.  I wonder how much of this was in travel expenses to go to Autism Speaks walks and harass parents who were walking trying to raise money to try to help their kids.

The neurodiversity movement has often criticized Autism Speaks for a small percentage of money that goes to help families or services.  On the day6 radio show that Ne'eman and I were recently on, he comments on the small percentage of money that NIMH spends for adult research and services for families rather than on scientific research.

I realize I'm not an accountant on any kind of tax expert, but I'm curious as to what ASAN has accomplished or done in 2013 to help those on the spectrum.  Perhaps they are the pot calling the kettle black.  Well I linked to their 2013 statement above in case anyone's interested.

Addendum:  One thing I neglected to mention in this post is that I'm curious as to how ASAN spent $378,000 plus on overhead out of a little over $450,000 in revenue but managed to spend a quarter of a million dollars on outreach and advocacy and  nearly $50,000 on their health care program.  Perhaps there's overlap between these and the overhead expenses, I don't know.  As I said before, I'm not a tax specialist of any sort, but I'm rather curious.  It's tempting to contact the IRS and ask them to investigate this, but I doubt they'd do it and not sure it's worth my while.  But I'll keep Gadfly readers posted of any future developments.