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.