Sunday, July 2, 2017

Will "autistics are awesome employees" affect eligibility for disability?

The autistic advantage in employment.  Neurodiversity is an asset in the workplace.  In recent months, headlines like these have been rampant in major media outlets such as the New York Times, The Atlantic Monthly, Time Magazine, The wall street journal and other places.  I've discussed before the problems with these headlines and whether they're valid.  I've argued that they were not true to my own experience and it quite possibly is not true to most other autistic's experiences.  I've also questioned if these media stories are helpful to autistics.  One of the major points to ponder is if autistics have all these superior skills and are good with computers, software testing, programming, cybersecurity, etc., then why are there quoted rates of autistic unemployment at 85% or higher?

There may be some people who would argue that articles and statements such as these are helpful in that an autistic could be employed if society were less prejudiced and this could educate employers to be more accepting and understanding and provide the accommodations the individual would need to perform the job.  Another school of thought is that a lot of autistics don't interview well due to aloofness, strange mannerisms, or an inability to look people in the eye.  There are supposedly plenty of qualified autistic employees who could do the job but might make a bad impression on an interview.  The interview should be structured to accommodate the person or not even have an interview with questions or personality tests that have no relevance in assessing the person's ability to perform their work duties.

These are the reasons why, according to this line of thought, we need to have articles such as these and that they could help, but that they are not hurting at all.  Even if they don't result in the autistic applicant being hired or not being fired if they already have a job, then these articles are harmless and nothing bad will result from them.  But is this really the case?

One area in which they might harm an individual is if they have so much trouble keeping a job they need to apply for disability; either SSI or SSDI or both.  Though Simon Baron-Cohen in his 2000 essay stating that autism in its higher functioning forms should not be considered a disability, he did write that autistics should still be considered legally disabled so they could get SSI or SSDI or whatever the British equivalent is if they need it.

Disability has been increasingly harder to get as the federal budget and deficit grows more sharply and the programs have less than sufficient funds as the baby boomers such as myself begin to retire and start receiving their social security payments.  I've already written about my unsuccessful four and a half year fight to get on disability shortly after I retired ten years ago.  From what I read, about two-thirds of people who try to obtain disability are turned down in their first attempt to get SSI or SSDI.  In order to have any hope of obtaining disability, there's a lengthy appeal process that can take many years.  Others I've known have been turned down for disability as well.  One person I know won their fight but it took them eight years of due process.  After my lawyer would not take my case to district court, I found out he'd had another autistic client whom he went to bat for in the lower federal court and lost the case.  I know of two others who recently won their cases.

The problem is exacerbated by society's and the U.S. government's attitude that people who apply for disability are lazy, are malingerers, not trying their best and are moochers.  For SSI (but not for SSDI) there is a means test in which you are not allowed more than $2,000 in assets.  If you have $2001 in your checking account, you're rich and are stealing from the taxpayers.

What better ammo and excuse is there for the federal government to deny people disability than these articles and the repeated statements that autistics make great employees and are an asset to the workplace?  These people should have no trouble at all getting a job and keeping it since industry is crying for people like these.  Therefore, any autistic person who does not work and needs money to survive (or more money then they might have from other sources) is just a lazy son of a bitch who's just an unethical slacker and not trying their best.

The autistics have superior visual skills, pattern recognition, attention to details which make them assets to the workforce is an illusion.  However autistic unemployment and the difficulties of obtaining disability are not.  Therefore I believe these articles and statements are not only unhelpful, but they have the potential to be very hurtful to the people they are meant to help if they need to apply for disability. (aside from giving struggling media enterprises a good story that will make them some bucks). 

Saturday, June 24, 2017

Finished rough draft of book on neurodiversity, now what?

In the some good news and bad news department, I've decided to write another Gadfly blog post. 

First, I'll get the good news out of the way, I've tentatively finished a rough draft of a non-fiction book about the neurodiversity movement.  I've written about all the problems with the movement that I see.  It's about 303 double spaced pages in version 12 of wordperfect.  I've never been fond of  Word and still use wordperfect as my wordprocessing software. It is just under 88,000 words.  The working title is Neurotripes: The Other Side of the Neurodiversity Story.  Thanks and a tip of the gadfly hat to Jill Escher for giving me the idea of using the word Neurotripes in the title as a parody of Mr. Silberman's tome.  I've included the history of neurodiversity and my personal involvement in it; comments on the scientific and legal basis of neurodiversity; the basis for autistics superior skills and what the research really means; the hostile cure debate; the murder card; a recycled albeit improved version of my essay about undiagnosing certain celebrities; the hostile cure debate; the actual neurotripes of Mr. Steve Silberman and other issues. A few of you have already read some of these things on my blog, so if the book is ever published all the info won't be novel to you. I've spent nearly two years off and on writing this rough draft. 

Now that I've gotten the good news out of the way I can summarize the bad news in two words; now what? 

Well this is a good summary, but I can't really explain all the problems in two words, ergo this blog post.  Before I do this I just want to comment that though this book may be worthless and unpublishable at this point, some people don't even understand how hard it is to write a book; even an unpolished first draft of one.  Two autistics I know (one from the internet and one I know in real life) told me they wanted to write books and asked me how they could put it on Amazon as I'd done with The Mu Rhythm Bluff.  I explained to them since neither of them had written even a word of their planned books, that they should write a book first and then think about this.

But the question remains "now what?"  I posted it on Facebook and got some captain obvious responses.  Submit it to an agent and write a query letter and I could learn how to do so online.  One person who included me in their book said I could email him the manuscript and he would have his publisher read it. 

There are a couple of things wrong with this.  Sending the 'script to agents and publishes if it is not ready for prime time will only result in rejections without a second chance for redemption.  After pointing this out someone suggested get people to read the book before sending it out.

There are not many people I know who would read the book for free and give me valuable editing and feedback.  One possible option is the internet writer's workshop, some of whose members critiqued the mu rhythm bluff while I was working on it.  However, you have to critique other members things and the process takes about a year.  I have only participated in their novel writing workshop, but I think they have a non-fiction workshop as well.  This is very possibly an option I will consider. 

Other people hire editors.  This is a process that can cost $3,000 or more and is not necessarily helpful.  I really don't have the funds for this.

I remember sending out my first novel to agents when it was not of publishable quality.  I got a positive response from one agent who was interested in reading the first 100 pages.  After reading them, she responded that she did not believe that she'd be able to find me a publisher.  I don't want to send it out before it's ready for submission but not sure how I would know this.

Self-publishing at some point might be an option.  I did this with The Mu Rhythm Bluff but sold less than 200 copies.  I got a few impartial positive reviews on Amazon and that was nice.  I was very poor at marketing and promoting it (no easy feat with a self-published work), Also, with self-publication it might not necessarily be ready for prime time.  But, if a publisher (particularly a major house) wants to publish it, must mean you've done something right. I never would have guessed Neurotribes was of publishable quality, but I was obviously wrong about that.  

Another problem is I did a variety of research on various topics for nearly a two year period and some of the stuff is not that fresh in my mind and I'd have to go back and review a lot of the articles and things I'd read to really know a lot of the subject matter thoroughly.  Though it's in separate chapters, there is overlap between a variety of topics and therefore some repetition which would turn a reader off. 

One of the problems is when I write a first draft, that is usually how I want to write the book and I am not good or flexible about making needed changes.  I guess I want people to tell me that I'm a genius and the next Hemingway or something like that, but I know that won't happen.  Ironically enough, Charles Bukowski has been quoted as saying most men are born geniuses but die idiots.  Perhaps he was talking about me. 

I'm also itching to write more short stories and novels, though maybe not as marketable, might be more fun than trying to outwit the cult of neurodiversity.  This project has taken me away from more attempts to write fiction for the past two years. 

I'm not sure when I will give up on this project or when I would consider submitting to an agent or publisher, but I get tired of having to wait until a work is finished.  That is one thing that motivated me to self-publish the mu rhythm bluff. 

My fantasy was to write autism-related novels and use my autism as a gimmick to have them published and be commercially successful.  To date I failed at that.  With changing definitions including people less severely on the spectrum, autistic people who write books (including fiction) are now practically a dime a dozen.  No one cared that I was an autistic capable of writing mediocre and unpublishable novels. 

However, due to the fact I'm an autistic person who regards this as a bad disability and wants a cure for my affliction, I have received some media attention, including being on an NPR show and being profiled in Newsweek and Los Angeles Magazine publishing an article I wrote about the cure debate.  As well as a few lesser exposures.  I've received more notoriety for wanting a cure and treatments for a neurological affliction than I have for writing a few books.  I wonder if anyone besides me sees the irony in this.

All that said, I wish I could get back to work and get some results, though it may be just easier to ponder the question of "now what?" 

Thursday, June 22, 2017

Will Divisions in the Autism Community ever be resolved

Individuals involved in autism, including parents, professionals, and autistic people themselves have a wide range of opinions on a variety of issues. These include persons who believe that vaccines cause autism, though the evidence for this is lacking. This also includes people who believe in the concept of neurodiversity, though the evidence of this concept as a biological fact or effective way of resolving the problems of autism are also lacking. There are also individuals such as myself who don't agree with either camp and have their own strong opinions about autism. The various sides have been at loggerheads with one another going back to the nineties when the internet had widespread use and diagnoses of autism increased rapidly. There have been nasty insults traded back and forth by all sides. On occasions there have even been death threats such as when one neurodiversity individual threatened to murder as many NTs as he could Likewise researcher Manuel Casanova stated that he'd received death threats from some people who believed vaccines caused autism when he made statements contrary to their beliefs. Temple Grandin's mother, with the exception of her unfortunate statement linking autistics to pedophiles, has stated that she usually stays out of autism debates because of all the political disagreements in the autism world.  Bernard Rimland's widow (forgot her name) has made a similar statement.

Lately, there have been some suggestions that these divisions can and should be resolved for the common good of all concerned. This line of thought is that if we all worked together on common goals then we'd actually be able to do things to help persons on the autism spectrum and their families vis-a-vis, insurance, lobbying legislatures, etc.  John Elder Robison recently wrote a blog post to that effect. This was partially in response to Amy Lutz who expressed concern that JER did not understand that she needed help in finding a residential placement for her son, when he suggested that if his own dog could make a choice that Lutz's son could too.  Ms. Lutz cordially invited John to come to her home and have a dialogue with her son about where he'd want to live, possibly to show to him he might not understand the problems someone with an IQ of 40 might have with that.  I realize at some point when John's busy schedule permits him time and he's in the Pennsylvania area he might accept Amy's invite.  I hope he does.

Though he has not yet accepted her invitation, he did write a conciliatory response to her concern.  This gave her encouragement believing that at some point the autism community could work together for the common good.

In a facebook exchange with Thomas Clements (the autistic buddha) he expressed unhappiness at being attacked by a neurodiversity SJW and asked for my input as well as John Robison's and Steve Silberman and others.  My only comment was that he was now learning what neurodiversity was really about.  This prompted a response from Silberman stating that my comment was an example of all the infighting among those interested in autism and it prevented those afflicted from receiving the help they needed.

Roger Kulp stated that there were no way all the sides could work together because of the great disparity of the groups in their goals.  Also he seemed to blame the psychiatry profession for being too inclusive of too many people to be included under the autism rubric when they wrote later versions of the DSM.  Roger makes what I believe are some valid points as there is a huge difference in functioning and clinical profile between lets say Alex Plank and Amy Lutz's son and Jill Escher's children.

I would like to give my take as an individual and go beyond just the entire group.

I don't believe the divisions in the autism community will ever be resolved nor will I make an effort to do so.

I will never work with neurodiversity people who have called me a nazi or at least implied this.  I will never work with people who have insulted my mother called her a witch and a yapping shrew and have stated that she's a danger to the autism community.  I will never work with people who have implied I might be out to engage in click bait and publicity for my blog after I angrily responded in one thread in another blog when they were ridiculing my celibacy and calling my mother names, I will never work with people who state that persons who want to find treatments and cures for autism are looking for a way to intentionally abort autistic fetuses.  When journalist Erika Hayasaki was writing a profile about me that was eventually published in Newsweek magazine, a bunch of NDs wrote her en masse, urging her not to write about me.  They probably also wrote Newsweek urging them not to publish the article.  I will never work with these people.

There is no way my goals and theirs will ever be reconciled, so I'm not going to try.  I don't believe that doing research on whether or not vaccines cause autism will get any results as this has been done ad nauseum.  I don't believe acceptance and accommodations are going to resolve all the problems of autism.  I don't believe that embracing businesses like specialisterne, SAP, Mindspark, etc. stating that the neurodiversity model will enable autistics to make a living will help.

In a facebook exchange with Amy, when she was enthused with Robison's post and felt that all the factions could work together, I stated I did not agree.  She asked me if I felt she was naive.  I told her I believed she was.  I still believe people who think this way are naive.

I hope that scientific research will be done that helps find treatments and prevention(not abortion) for autism.  However, at the present time, there are no easy answers, and I believe it is naive to think so.

Though John Robison may have had good intentions with his post, I don't believe the various factions will ever work together nor should they attempt to. 

Tuesday, June 20, 2017

Silberman's Neurotribes a major motion picture?

In the some news is terrible news department, Gadfly has just learned that Steve Silberman's book  Neurotribes will very possibly be made into a motion pictureI'm not sure, but I think (and hope) that this is not definite yet, and the book has been optioned, but a film is still not a done deal. This is a journalist who omitted portions of Kanner's statements that appeared in the primary source to change the meaning. He also stated that Kanner excluded patients who had seizures from an autism diagnosis to make the claim that this was part of the reason of the great rise in autism diagnoses.  This is despite the fact that at least one of Kanner's eleven original cases did in fact have a seizure disorder. This is an individual who has justified the analogy between people who want a cure for autism with eugenicists and nazis.  This is someone who has stated that disability is part of the human experience and we all become  diaper wearers at some point.  He has compared autism with homosexuality.  When asked about people who want to cure autism, he compared it to his parents taking him to a psychotherapist when he came out gay as a teenager to cure him of his homosexuality.

When the ND's bullied William Shatner on twitter a couple of months ago, he lead the pack of people who said that the NDs were the good guys.  These included persons who called Shatner a human shit stain and told him to shut the fuck up, and Ari Ne'eman's dishonest and abusive tweet that Shatner was yelling at autistic people.  He was appalled when Shatner had the temerity and chutzpah to block him on twitter.  Silberman blocked me on twitter when I politely told him and Thomas Armstrong they had never been in special ed and did not know anything about it.  Silberman loves to dish it out but he can't take it.

He has compared the autistic brain to the non-autistic brain to a windows vs. linux operating system.

He claimed Autism Speaks not having board members of the spectrum was like the NAACP not allowing any blacks in.


Though I purchased Silberman's book on kindle and read it, I will not be seeing this movie if it is made.  I urge anyone who cares about autistic people and their families and the suffering they have to endure that this man has made a mockery of to boycott this movie and urge people to do so. 

When journalist Erika Hayasaki wanted to write a profile about me and Newsweek was interested in publishing it, she interviewed neurodiversity activist Nick Walker in order to achieve balance in the article.  Nick Walker broadcast this news to some of the nastiest people in the ND movement and they contacted Erika en masse (and probably Newsweek also) urging them not to publish the article about me.  Fortunately, this was one of the few times the NDs failed at one of their crusades.  However, Newsweek apparently wanted to compromise with the hate mongers.  The headline of the print article was "A hater's guide to self-hating", something many NDs have been labeling me as for the last seventeen years or so.

I'm going to try to possibly return the favor and see if there isn't someone at Paramount that I can contact and see if I can put a stop to this project.  There is now a change.org petition to Paramount Pictures urging them not to produce this movie  
sign here
I guess I will have to try to have a stiff upper lip and not let this ruin, my day, my week, or possibly the next few years that it might take to develop this project to its completion.


Addendum: For anyone interested in contacting Paramount about this movie, their number is (323) 956-5000 and mention the movie and the name Elizabeth Raposo.  They took my name, number, and complaint and said they'd have someone get back to me, but I won't hold my breath.  I also called Lorne Michaels' office at (310) 746-0300 and they said they would tell him, but I doubt they will, but these are the numbers to complain if you're interested in doing so. 

Thursday, June 15, 2017

Gadfly approved for retirement social security

Life is filled with many milestones for typical people.  Getting your driver's license at 16, graduating high school, turning 21 and getting your first drink in a bar, graduating college, getting your first job, etc.  One of the last milestones of life (shortly before your life comes to an abrupt end) is being approved for retirement social security and getting your first check.  If you have an autism spectrum disorder, this is a particularly significant one, given the huge percentage of autistic people who are unable to work, receive SSI and so forth.  I'm happy to announce that I'm an individual on the autism spectrum who will turn 62 in less than three months and I've just been approved for this significant milestone.  My monthly allotment won't be much, but it will certainly be helpful, considering my financial situation, though not precarious has certainly been less than stellar over the last several years.



Recently I wrote a post where I commented on the fact that Ron Sandison, Temple Grandin, and, by extension, Autism Speaks stated or at least implied that autistic people who don't work are lazy loafers whose parents spoil them and baby them.  Tom Clements (AKA "the autistic Buddha") wrote a laudatory post on facebook lauding sandison and Grandin's comments.  When I politely begged to differ in a comment one of Tom's friends (a nasty ND) called me an enabler and a quitter and I blocked this person.

To anyone who thinks I've been a slacker, particularly in light of this significant milestone in my life, I'd like to write a post about my work history and this subject.  This may be long so bear with me.

Though I went to special education as a young child I was mainstreamed by high school.  In my adolescence, I went to pot both literally and figuratively and got poor grades and had tremendous problems.  Going to college at the time seemed out of the question for me.  My parents had a swimming pool and paid me some extra money by cleaning it and putting chlorine and muriatic acid in it as a pool service man would do.  I thought maybe I knew enough to be a pool service person and that I'd be a self-employed pool cleaner for a living.  My disability and executive functioning problems meant I'd never be able to carry out my modest ambition. I worked briefly during the summer doing clerical work at the los angeles suicide prevention center.  At eighteen my last year of high school i worked an hour a day doing janitorial work at a school my then psychologist owned.  These were my only jobs at the time.

Not knowing what else to do at age 19, I enrolled in a community college with the possible goal of being an academic or clinical psychologist.  By the time I was nearly 22 years old and ready to transfer to a four year university I saw another psychiatrist at UCLA who was the first person to tell me I was autistic ((I'd been diagnosed by one psychiatrist and a pediatrician prior to this but had not been told of my diagnosis by my folks or them).  He commented on the fact that I was nearly 22 and had not worked and asked me what I wanted to be and when i told him I'd thought about being a psychologist or brain researcher he proclaimed, "you're going to have to settle for something less than what you want to be".   He suggested manual labor as something viable but was not more specific than that.  I barely graduated college unable to prove him wrong.

My disability and mediocre college performance made graduate school out of the question so at age 24 I first started trying to work.  I got my first job loading items onto industrial palates in a warehouse for 3 dollars an hour, minimum wage at the time.  I made numerous mistakes and though they didn't fire me they took me off the loading job and had me stamp some stuff with a stamper, when I asked to be put back on the former job, they consented to give me a chance.  some coworkers complained to me about mistakes and I left the job.

My next job and first fire was from a large insurance company where I was hired to do clerical work.  They were a conservative establishment and required employees to wear a tie and dress clothes.  I got some dress pants but neglected to get them altered by a tailor and looked very bizarre coming into the office.  A few weeks later I was fired and the boss suggested I might be hyperactive and I should get on a diet without any sugar.

Undeterred, I got a job in a drug store typing prescription labels.  It was an exploitive environment where various labor laws were violated and I was not allowed to take two breaks during the day or be paid for overtime and I angrily left this job.

I had another five week job typing up sales reports for this company that sold art stuff and then they claimed business was starting to get bad and they had to let me go.  I had problems with hygiene on this job and the boss dropped a subtle hint by handing me a small can of deodorant.

I had another job doing clerical work for a couple of hours and the boss said she thought the job was too confining for me as I was not paying attention to work and let me go.

Another job, I did data entry and made so many errors they fired me after three days.

I got a job with the phone company which was less inclined to fire people then other companies, and made the probationary period.  I was discriminated against in a job advancement opportunity and filed a grievance with the union.  Not long after this, they started pestering me about mistakes, being really nasty to me and it got so bad I was compelled to quit after being there more than three years.

I got another data entry job and they falsified the amount I was producing and used this as an excuse to fire me.  I still had problems with hygiene then and that may have been a factor.

I had another approximately three month data entry job where I sometimes got in trouble for raising my voice and the boss threatened to let me go.  They supposedly started running out of work and laid me off as I had the lowest seniority.

Another data entry job, I was working at the computer and supposedly all the work I had done was wiped out for some reason and they let me go.

After this my mother called the Los Angeles Chapter of the Autism Society of America asking them if there were any kinds of jobs where they would hire and keep autistic people.  This was in 1985 before specialisterne, rising tide car wash and others who claimed to help those on the spectrum with employment matters.  They referred us to the California State Department of Rehabilitation.  Because of my ability to type and the belief that people who worked in the medical profession were kinder and more tolerant of differences, they recommended I take their course in medical transcription.  It was a very abysmal program and they treated me badly.  For further details anyone interested can read here. Despite voc rehab's bad treatment of me, I approached one person who consented to train me as a medical transcriptionist based on what little I'd learned from these people. As a trainee, I was paid a very low rate on production basis and for about a year I worked for this person as an independent contractor for substantially less than the minimum wage.

As I learned more about transcribing, I managed to get a few gigs but most of them did not last long and were not as good jobs as others with more skill and experience could get.  I finally got my first crack at one of the more challenging and potentially higher paying hospital jobs but was fired after a couple of months.  I was fired from still another job later.

I finally got a job in a clinical setting which was easier than hospital transcription where I was not fired, though I get into arguments with co-workers and was occasionally called on the carpet for less than satisfactory work.  I lasted there a year and a half before getting fired.

At this point, I thought I'd reached the end of the line and have to apply for SSI where even if I qualified I'd be restricted about assets in the bank and have other restrictions placed on my life to get a low amount from the government.

I'd been told by various people that if I disclosed my disability that would help.  I was referred to this organization who would pay employers the first two months salary of their disabled employee as an incentive to hire the disabled worker.  A radiologist with a practice agreed to this saying he had a son with a learning disability and i'd work for them and they'd keep me there forever.  I tried to go as slowly as possible in order to avoid the errors I'd made in the past and was told by the office manager i was not doing the work fast enough.  After working for them a month, the office manager fired me on the radiologist's day off.

I decided to try one more time before giving up.  I found a company that did worker's comp and PI reports for attorneys and I was hired to type up these.  The supervisor did not want to deal with the organization and preferred to work with me herself and did not accept their payment.  I worked there for a bit over two years.  Then the company was accused of running afoul of the law and was starting to have problems,  I was let go as the most expendable person, though they later completely went out of business.

I found another transcription service and worked there for a year.  After this I became better and worked for another place for almost three years, but they restricted what doctors and accounts I could do and I ended up getting the worst work you could get being paid on a production basis.  I had conflicts with them and resigned.

I worked as an independent contractor for another place for several years.  Then I was fired from a couple of other jobs after this and retired a few months before my fifty-second birthday. I applied for disability which I've detailed in other posts which I won't link to but I'm sure the interested reader could find if sufficiently motivated.  It was a heart wrenching and humiliating experience and to make a four and a half year long story short, I was not able to get disability.

Ten years later, it looks like I will finally be able to get the disability money that I had put into social security in the form of retirement starting in November.  I may write a brief follow-up post after my first payment is deposited in my checking account.

Contrary to all the propaganda headlines from the wall street journal and New York times about what a great asset autism is in the workplace, the vast majority of those on the spectrum have difficulty working, receive SSI, and/or are supported by their parents.  Therefore, I'm rather proud of the fact I was in the workplace (though not employed 100% of the time) for the number of years I was and am able to have the cachet of this milestone.

I apologize for the length of this post,but there was no way I could express my work history and what happened to me over a more than forty-three year period more concisely. If anyone stuck around long enough to read the thing in its entirety, I do appreciate that.

So I just want to say to Temple Grandin, Autism Speaks, and particularly Ron Sandison, this is my work history.  It's hard to know it completely from this blog post without having experiencing it first hand as I did but I went to Hell (Mr. Sandison I know you believe in Hell so in your case I'm not saying this just figuratively)and back.  Being fired from those jobs and being compelled to apply for disability was absolutely traumatic, humiliating and heart wrenching, and I don't appreciate the three of you implying that I'm a lazy loafer.

The New York times and Wall Street journal do autistic people a disservice by claiming they have all these hidden abilities that make them hugely valuable to these companies and I don't appreciate that either.

But I know the majority of autistic people will not achieve this milestone (not to put anyone down who is less able than I am) and this is a proud moment for me.

Monday, May 29, 2017

Neurodiversity's latest crusade of censorship

I see the neurodiversity movement has a new crusade to get amazon to ban the sale of a book they find offensive.  The book is entitled how to prevent autism, some of the most vicious fighting words from their viewpoint.  They believe that no person has a right to prevent any person from existing or from being the person they were born to be.  They've started a change.org petition which at last count has approximately 2,600 signatures.  Amazon has apparently given them a positive response claiming they will look into the claim which is very concerning to me.

I believe this is censorship and that is wrong.  They've managed to bully the government to say they will stop combating autism.  They managed to bully autism speaks into giving up their statement that they want to prevent autism.

If I could prevent a child from being handicapped I would certainly do it and I would hope that any parent or medical professional would do the same and I'm not talking about abortion of prenatal fetuses.

I doubt very much that the book's author Dara Berger would be able to prevent her daughter or other children that she might have from becoming autistic, so it is something they should not even worry about.

Some people have stated that I'm just as bad as the other side in terms of my blogging.  There are some neurodiversity proponents who would claim some people on the other side are just as bad and do things like this.

On the second point, I must concede they would not be wrong.  About a year and a half ago, shortly after "neurotribes" was published, a group of rabid anti-vaxxers protested to Amazon, and the print edition of Steve Silberman's tome was put in abeyance and Amazon would not sell it for a brief time.  But finally, they internally investigated the fact and could not find a basis for discontinuing the sale and reinstated it.  The anti-vaxxers were wrong to do this.  However, two wrongs don't make a right (though two Wrights did create a wrong with the way autism speaks turned out :)).

As low a personal opinion as I have of Steve Silberman and the book Neurotribes and its horrible message, I would never ask Amazon or anyone else not to sell the book or say that it should be banned.  As low a personal opinion I have of Silberman and other adherents of the neurodiversity movement, I would never advocate denying their freedom of expression to publish what they want in a book as long as they don't libel anyone.

It's a sad day that neurodiversity may actually succeed in bullying amazon and other entities into censoring free expression.  Yes, the same goes for the anti-vaxers as well.

I can only hope this behavior stops on both sides of the aisle.   

Addendum: I guess the first amendment only applies to government stopping publication of things and free speech, so I was mistaken when I said that these neurodiversity individuals were stomping on first amendment rights, so I've made corrections to the original blog post. 

Sunday, May 21, 2017

SB's (Simon Baron-Cohen) BS editorial on neurodiversity

I see the renowned simon baron-cohen is at it again with an editorial urging people to embrace the concept of neurodiversity. Many years ago, SBC wrote another article in which he stated that high functioning autism (as opposed to low functioning autism) should not be considered a disability, except when the person is applying for SSI or some other disability benefits in some sort of bizarre Orwellian double think. In the new essay, he's changed his tune a bit, stating that though autism (including high functioning) should be considered a disability, it should not be considered a disorder.   He repeats the statement from his first piece that autistic versus non-autistic is no different than left-handedness versus right-handedness.

This is an individual who has espoused the controversial assortative mating theory of autism claiming that autism was only rare until the advent of the IT field when male and female computer nerds starting meeting each other.  After having offspring, these nerds managed to populate the world with autistic people at such a fast rate the prevalence went from 1 in 2,500 to 1 in 68 in just one generation.

Even more bizarre is the fact that he claimed in his article about autism, talent and hypersystematizing that among the great superior skills that autistic possess is a visual acuity equal to that of birds of prey.  This was based on one study done by someone named Ashwin who worked in Baron-Cohen's lab and SBC himself is one of the secondary authors.  It turned out the whole thing was just an error on the researcher's part in using the optometric equipment to assess the visual acuity (assuming it was not outright dishonesty by the researchers).  The optometrists who designed the test refuted what SBC's group said by showing they did not use the equipment properly and the group had to concede they were in error.

We also have to judge the good doctor by the company he keeps:  The individuals whom he consulted with and gave him the ideas behind his first piece include Temple Grandin, who insults and shames autistics who can't work and insults their parents, David Andrews who is abusive and profane to anyone who does not agree with him and the self-diagnosed Lianne Willy.

For the above reasons, we must take with a grain of salt what this essay may say, but I'd like to dissect it anyway.

He uses genetics stating that though 12% of autistics have de novo mutations that almost 50% of the genetics of autism involve common inherited variants.  In at least some of the studies I've read, including those from Jonathan Sebat and Michael Wigler and with personal communication with one Dan Geschwind, the rate of autism involving spontaneous mutations is significantly higher than that, possibly between 20-30%, though a substantial amount of autism does come from common heritable variants.  According to Sebat, the number of de novo mutations is likely underestimated due to the fact that the instrumentation to detect them still has limited power and it is likely more cases of autism arise from de novo mutations than have already been found.

SBC cites an article by Huguet et al stating that almost 50% of genetic association with autism comes from common variants and states that these are not disorders but rather natural genetic variation.  SBC ignores the part of the article where they state that environmental factors are 38% responsible for autism, so this goes against the idea of natural variation.  SBC conveniently ignores the research showing a much higher prevalence of autism in DZ twins than in non twin siblings who have the same genetic makeup.  He also does not address the fact that autism has been associated with Thalidomide, acetominophen, pre-eclampsia, cocaine, and other environmental factors. This suggests that autism is not a natural variation.

Baron-Cohen cites a variety of neuroanatomical studies showing that certain brain areas are either larger or smaller in autism and this is not a sign of disorder.  Also the fact that there are more neurons in the frontal lobe in some studies on autism.

He neglects to cite work by Bauman and Kemper who have found smaller numbers of neurons in parts of the cerebellum and hippocampus which would point to a neuropathology, i.e. a disorder.

More germane, he does not mention the work of Wegiel who has found heterotopias in post mortem autistic brains as opposed to controls.  Heterotopias occur when during fetal development germinal cells which are developing into neurons fail to migrate to their correct spot and are misplaced in the brain.  This causes dysfunction and often seizure activities.  This is likely why seizure disorders occur in as many of 30% of autistics.  Heterotopias in the brain are analogous to an inguinal hernia where the testicle is out of place or an ectopic pregnancy in which the fetus is not in the correct position.  There can be no question at all that this is a disorder and not a difference as SBC insists.

SBC and other NDs state that epilepsy is a co-morbid condition along with autism, but is not autism itself.  I'm curious how neuroanatomicaly, they can separate the parts of the brain which are just autistic and do not give rise to seizures.  The fact that autism is associated with seizures is significant and you cannot separate the two as SBC and other NDs attempt to do.

His next argument that autism is not a disorder is the fact that autistics, as a group,  do well, on the block design portion, of the Wechsler IQ test, showing their aptitude for hypersystemitizing and how things work.  This is one argument that people use to claim that autistics have the aptitude to do certain jobs such as software testing and all of the BS pieces claiming they make great employees.

While it's true that autistics as a group do well on block design, or at least better than on other portions of the IQ test ,and this is a widely replicated finding, it's not true of all autistics.  I'm one of them.  I have a scaled score of 4 where 10 is average.  So I'd be mentally retarded if I scored this low on all of the subtests.

Though autistics do at least comparatively well on the block design test, they do poorly on the comprehension subtest of the Wechsler.  This is where they are asked common sense questions such as what would you do if you found a stamped envelope on the ground or if there was a fire in a movie theater.  I also do poorly on this test though better than on the block design.  This is very relevant to the problems of autistics on the jobs and in other social areas as it reflects impairments in social judgment where they would say something offensive to a boss on a job and get fired or this would make people not like them if they had a poor social understanding in other areas.  Baron Cohen does not go into why a good aptitude for block design means autism is not a disorder, but a poor score on the comprehension subtest does not mean autism is not a disorder.

Lastly he claims that a disability is different than a disorder because a disability can be properly accommodated for, but not a disorder.  Though he stated in 2000 that high functioning autism is not a disability, he stated in this second piece that if a person with autism does not show a disability he should not be diagnosed as such.  He gives the comparison that if a fish had to climb a tree it would be considered disabled.  He claims that autism should not be considered a disorder because they could function well in the correct environment.  But does not go into any of the details of how this could be done.  I'm still waiting for SBC or any other member of the neurodiversity movement to state how autistic disability can be accommodated for, legally or otherwise, so they could function as well as a non-handicapped person.  SBC seems very short on ideas in that area, but if he has any suggestions, I'd be glad to hear them and he should explain how autism can be accommodated for so that it would cease to be disabling. 

Though I'm more severely autistic than Temple Grandin, John Robison, Mike Carley, and others, I'd be considered pretty high functioning by most standards.  If Baron-Cohen had autism to the extent that I have it, he never would have been able to go to graduate school, become a psychologist and college professor, never been able to write his books and get them published, marry his wife, and have his three children.  If that had been the case I can't help wondering whether or not he'd still consider autism as not being a disorder.  


No one should take this man seriously.  He should not receive research funding or be a licensed clinician if he is one already.  I get so tired of hearing SB's BS.