Saturday, October 14, 2017

Interesting day with John Elder Robison

No, reader, your eyes are not deceiving you when you read the title of this blog post.  I spent a good portion of my day today with John Elder Robison.  Before you stop reading this post because you think I sold out to the neurodiversity movement along with Autism society of america, Autism Speaks, and the federal government, I assure you I'm still the same pro-cure, anti-neurodiversity guy I was yesterday before I met JER in person for the first time and have been for years.

Though I've had my differences with John in the past, he's always been cordial to me and has been willing to listen and let others with a viewpoint that does not agree with his tell their side of the story.  This is in contrast to other neurodiversity proponents who do everything they can to censor me and prevent my POV from becoming known. 

John told me he'd be in los angeles at a presentation and invited me to come.  We'd known each other in cyberspace for years, but had never met in person.  I accepted his invite, and decided to put our differences aside.  We met and shook hands and he told me that he was interested in having me speak to people at the conference and show them the divergent viewpoints of those of us on the spectrum. 

I was a bit concerned that Alex Plank might show up and there might be some problems, but I'll write about this a bit later. 

I listened to him lecture in the auditorium and was a bit surprised when he said he knew autistic people who lived in the los angeles area and mentioned me by name and pointed to me.  I raised my hand and some of the audience clapped and he spoke about how much I hated my autism and wanted a cure. 

Shortly afterwards, Mr. Plank did show up and JER pointed him to the audience to.  Then, to my surprise, he invited Alex and myself to join him on stage.  The audience asked us some questions and the narcissist in me enjoyed getting some attention. 

We spoke of the problems of employment of autistics and I stated there was no simple solution, except for teaching an autistic a marketable skill and having them work at home if they could, such as what I did during my last nine years or so of being employed when I did medical transcription at home. 

Alex Plank commented that since he was self-employed, he didn't have to worry about being fired.  I was curious how Alex supported himself.  Someone in the audience shared my curiosity. and asked him about this. Plank stated that he made money from advertising revenue on WrongPlanet.

After the presentation, JER spent some time signing his books for people who went to the conference and he and I chatted a bit.  I was hesitant to talk to Alex, but he made a few comments to me and I spoke with him. 

JER asked me about my online friendship with Manuel Casanova and we discussed that a bit, but not in great detail.

I then brought up Roger Kulp's name telling him how much I wanted Roger to have a more visible position in the autism world and wished that he could have been on Autism Speaks' Board.  John said he believed at some point Roger would be appointed to something, but I was rather skeptical about that, and told him Roger had basically told me he accepted the fact the federal government and Autism Speaks were not interested in hearing his pearls of wisdom and he'd moved on.  I said that I wished Roger could have been there with us.  Robison said that if and when he's in Roger's hometown he'd be interested in contacting Roger and getting together with him.

Robison also asked me about my online friend Yuval Levental and I told him what I thought Yuval was doing now.  Yuval has been a very devoted fan and sort of my self-appointed publicist and I've appreciated the fact that Yuval would spend the time he has trying to help me get out the word about my novel "The Mu Rhythm Bluff" and my perspectives about autism.   

Without going into all the details of our chat, John Robison stated that he didn't believe that I should fight with neurodiversity proponents and that I should try to work with them on a common goal.  I explained to him that I did not want to work with people who were abusive to me and insulted my parents. 

This is when my interactions with Alex Plank became a bit more interesting.  Alex pointed out that he was an ND guy but had never insulted me.  I then pointed out that he'd banned me from his website, which seemed to surprise JER, who said "really?" and looked to Plank was was nonplussed.  I also said that I'd constantly experienced rude behavior from some of WP's denizens, being called a minimally educated sociopath and such.  Plank pointed out to me that with thousands of members he could not control their behavior.  I replied that I judged people by the company they kept. 

Alex went on to apparently extricate himself from William Freund and Hans Peterson, two wrongplanet members who went out and murdered people, explaining that just because out of many members a couple of them turned out to be murderers, this was no different than the general population.  I disagreed with this, believing the percentage of killers on WP exceeds that in the general population, but did not want to be antagonistic, so I said nothing.  Then Alex added that did not make him a murderer.  I responded that though I'd had many disagreements with him, he was certainly not a murderer.  In spite of the strong differences Plank and I have had (even moreso than with JER) we managed to stay cordial to each other, so my worrying about a bad confrontational situation with Plank proved to be for naught.

Before we called it a day, I asked Robison if he had any proof that the Georg Frankl that Kanner had worked had also worked with Asperger. I'd looked at Steve Silberman's bibliography and other references and I could not find that proof.  Robison pointed out to me the article he'd written about the subject which I read but don't recall him ever providing that, so I said I'd read it again.  There is supposed to be a transcript of when Frankl applied for a position in North Carolina and I said that I'd look into it. 

Well, I hope no one thinks I'm a sellout for spending time with Robison.  I had no ulterior motive if anyone wants to think that.  A good day seemed to be had by all and again I'm glad I got along okay with Plank. 

Saturday, October 7, 2017

deactivating my facebook account for censorship of pro autism cure post

I just wanted to let my readers know that I encountered a facebook group autism acceptance (or something like that) who had a post asking why any autism group would promote a shirt advocating for a cure for autism and ergo the destruction and killing of autistic people.  It was captioned with the following photo:
This is a photo of actor Vin Diesel wearing a shirt advocating for a cure for autism .  This generated a flurry of angry comments protesting a cure and claiming those wanted a cure wished to destroy autistic people.  Some people alleged that this was photoshopped and Mr. Diesel never actually wore this shirt, i don't know if that is true or not.  

I made the mistake of posting a comment on this page stating that though a cure may be considered politically incorrect, it was a nice thought and that if people did not want a cure for autism they should not get one. 

I then copied and pasted this photo on my own facebook page with a similar comment.  I was shocked to find that at least one of these neurodiversity people reported this to facebook and had my post deleted. 

I was so shocked and angry over this injustice that I posted that I was seriously considering deleting my account.  One individual commented that some neurodiversity people had started a page entitled "Mothers who hate their autistic children" which was apparently one of the well-known attempts by some neurodiversity activists to bring back the bettelheim era.  They would say things like some mothers wanted to cure their autistic children because they hate them.  They filed a report with Facebook who responded that this did not rise to their definition of hate speech and did not delete the page.  But apparently if someone posts a polite comment and photo like this, this constitutes hate speech from Facebook's point of view. 

I wrote a post stating that I was considering deleting my account I was so angry over this, though some people urged me to stay on.  I requested an account delete but it usually takes two weeks or more to go through and you can cancel before deleting your account.  I decided there might be an alternative explanation for this like a DMCA violation of posting this photo, so I cancelled the delete and told people I would stay for the time being. 

I thought this originally because the photo was taken out of the original post I got it from, but I just think the page owner found it so offensive she coudldn't stand looking at it.  So, it seems unlikely there is an explanation other than the fact facebook engages in censorship of anti-neurodiversity pro-cure posts even if they are polite.

 I've now decided on a compromise.  Instead of deleting my facebook account I deactivated it, meaning that I put it in abeyance for an indefinite period of time but I can always go back and put it back on if I want.  So this way, I won't lose data if I want to go back in and get some old photos or some other data I have on my FB page.  I can also restore the page if I change my mind. 

There is no point in participating in facebook if they are a pro neurodiversity organization who engages in this type of censorship.  Now the ND's have succeeded in getting autism speaks to abandon the search for a cure and the federal government to abandon combating autism, they've now suceeded in getting facebook to delete any pro-cure posts that they report to them.  At least they were not successful in getting my newsweek profile killed. 

So I guess if anyone gives a shit about me they can see what I post on twitter, which does not seem to engage in the petty censorship that facebook does. 

I enjoyed logging on to facebook and looking at some people's pages and chatting with people and all the other perks involved in being on facebook.  I guess the ND's can take some satisfaction in that they've delivered another blow to me and unfettered speech.


Thursday, September 28, 2017

If a new HHS secretary is appointed, will they do something about neurodiversity

Those who have been following the news know there's been some controversy about certain government officials in the Trump administration who have abused their power by using government aircraft at taxpayer expense when they could have purchased much cheaper flights on commercial airlines.  HHS secretary Tom Price is apparently one of the worst if not the worst offender in this regard, piling up a government tab of around 400 grand.  After a barrage of media publicity, secretary price claimed he would not be using the private jets anymore.

According to an article in the Los Angeles Times, president Trump himself expressed displeasure at the antics of his HHS secretary and has not ruled out firing him.

After Price's appointment by Trump and his confirmation by the Senate, I emailed Mr. Price urging him not to allow members of the neurodiversity movement such as John Robison, Samantha Crane, and Noah Britton to serve on the IACC.  I also urged him not to seat an IACC if the executive branch of the federal government could legally do so.  Though congress passed the CARES act which includes having to have an IACC, I'm not sure if that means the president and secretary of health and human services are legally obligated to appoint members.

Not surprisingly, Mr. Price did not respond to my email and, if what I've been reading about him in the news is true, he's apparently less than an ethical person.

If Trump fires Price and appoints a new HHS secretary, then I guess I'm going to have to start all over again and write him/her, urging them to do something about the ND's.  Not just the fact that some of them serve on the IACC, but also those in any position of power such as Scott Robertson's appointment to some other thing outside the IACC and John Robison's and Steve Shore's appointment to review grant applications.

As I've said before on multiple occasions, several anti-cure, anti-treatment individuals have been appointed to the IACC and other government affiliated programs.  Not a single pro-treatment, pro-cure autistic has been appointed to any of these.  This is despite the fact that Roger Kulp and possibly some other individuals on the spectrum who are in favor of cure/treatment might actually have some constructive ideas about autism-related matters.  Roger tried to get on the IACC but was turned down. 

Though John Robison has claimed he's pro-treatment and is in favor of remediating the disabling aspects of autism, he still says he's opposed to a cure, which, in my opinion, is like saying people should learn how to swim, but they shouldn't get wet.

It will be interesting to see if Trump appoints a new HHS secretary and if he does, that individual will be hearing from Autism's Gadfly (me).  So far, secretary Price, NIMH head Joshua Gordon, and President Trump himself have not taken a position against neurodiversity and have not done anything about these people and their influence in government-related autism matters.  If Price gets canned and Trump appoints someone else, I hope they'll do something about neurodiversity. 

Tuesday, September 26, 2017

Life didn't imitate "the good doctor's" art in one case.

There's been lots of hoopla over the new TV show, "The Good Doctor" which uses the cliched trope of autistics as supermen.  Apparently, in the good doctor's case, M.D. should stand for Magical Deity.  Though I watched all eight episodes of "Atypical" I decided to take a pass on "The Good Doctor" as I find the premise of autistics as supermen offensive, was bored and unable to follow the plotline in "The Accountant", and felt the premise of the show was also not compelling.  Therefore, I suppose I can't completely comment on the show without having seen it, so I'll end my comments about the actual show here.

But one of the interesting questions that has come up due to the publicity the show has received is whether or not an autistic could actually be a competent physician in real life.

In John Elder Robison's book, Switched On, he states that one of the other Asperger's research subjects of the Harvard TMS group is an orthopedic surgeon.  

Neurodiversity activist Sara Luterman, writing for NOS magazine, claims there are lots of autistic physicians and medical students. I did not check out her link, so I can't really comment on how valid this claim is.

In a Scientific American Blog an author who I think may be savantism expert Darold Treffert (but I'm not sure) stated that it's plausible that an autistic savant could be a gifted surgeon.

But it's an interesting question.  Even if an autistic is so mildly on the spectrum or can overcome his/her disabilities to such an extent they could get an astronomical GPA in college, get into medical school, have the ability to work with patients during their third and fourth year of medical school, would they be able to perform the functions of a physician effectively?

The reason that it's such an interesting question is that there is one known case of this I've written about previously where the answer appears to be no This is the case of a physician alleging to have Asperger's syndrome named Martin Jakubowski who began a primary care physician residency in a hospital in Ohio.  Though he scored high on his medical knowledge examination, he scored poorly on the emotional intelligence exam.  Supervisors noted his weak interpersonal skills and began to question his ability as a physician.  He had difficulty with instructions to patients, interacting with other physicians and speaking on the phone when doing his job.  Because of all these problems, the autistic physician was fired.

He attempted to appeal his firing, claiming that his disability should be accommodated because of the Americans with Disabilities Act.  Jakubowski lost his case in Federal court because the court agreed with the hospital that Jakubowski's impairment prevented him from being able to perform the job with or without reasonable accommodations.  The "good doctor's" request for the accommodation of  "understanding and awareness" was not deemed reasonable.  He also asked that a doctor be assigned to him to monitor his activities.  The court agreed the hospital had the legal position this was not a reasonable accommodation as it would cost the hospital too much money and time to do this.

Keeping patients safe is certainly a requisite, so it is certainly reasonable not to allow an autistic physician to continue in their residency if their disability prevents them from being effective in their job.

Very few people who have watched and commented on "the good doctor" will ever be aware of who Martin Jakubowski is and the irony that life didn't imitate art in at least one instance.  

Saturday, August 12, 2017

Atypical: A typical Hollywood presentation of autism

Right before atypical came out on netflix, I thought I’d watch it and write a blog post about it.  A hot commodity in the autism blogosphere and cyberspace, I knew it was bound to generate some controversy.  Those who have read my blog for the past nine years know I seem to thrive on controversy, or at least jump into the forefront of it, either intentionally or unintentionally.  However, I got sidetracked by the shock of watching the first few moments of the opening first scene of the first episode, noting Sam the protagonist doing a behavior called “twiddling” a form of self-stimulation similar to the identically named activity I do that I’ve written about from time to time.  His therapist next asked him if he wanted to donate his brain of science, mirroring the NPR show “morning edition” which I appeared on,  discussing my donating my own brain to science, in which I discussed my twiddling in words close to identical to what Sam said.  It seems improbable that this is a coincidence, but I suppose there’s a middling to fair chance Robia Rashid listened to my NPR interview while doing research for her show. 

Now that I’m over my initial shock, I’ve decided to do what I’d originally planned to do and give my $.02 worth take.  I suspected that the irascible ND’s would take umbrage to this show, and I was not disappointed.  This show is bound to generate some controversy in the next few days. 

There are some things to like about the show.  As I wrote in my previous post, celibacy is a problem for many autistic people that gets very little play in the media or in literature and other entertainment mediums.  I’m glad that the show takes up this theme, but there’s a downside, but more about that later.  Amy Okuda, Jennifer Jason Leigh, and Brigette Lundy-Paine are attractive actresses who add some eye candy.  (At my age, 55-year-old Jason Leigh is attractive, though possibly not to younger viewers).  The show has a certain intensity and conflicts between the various characters that adds some intrigue.  Also, each episode has an old Sidney Sheldon style “cliffhanger” ending that may compel at least some viewers to watch more.  The end of the eighth and final season episode is particularly intriguing in this regard, but I won’t spoil it for anyone.  It appears Rashid planned to make more episodes and hook her viewers further.  Lundy-Paine’s character is fleshed out and provides some intrigue to the show.  The episodes do show some (though not much) of the angst of living with autism.   

However,  the pros stop there and are inundated by the plethora of cons.  I was prepared to possibly refute some of the hostile remarks about the show the ND hatemongers would inevitably make.  However, I found myself nodding in agreement with their take on Sam Gardner as a sort of cardboard one-dimensional character who represents a conglomerate of autistic symptoms, rather than a believable autistic person.  He wears headphones to eliminate sensory noise, despite being mildly autistic enough to work part-time, go to a mainstream school and get A’s.  This is much more common in lower-functioning kids such as Judith Ursitti’s son than in someone with mild autism.  It shows him on a job not having any problems with co-workers or job performance, particularly intriguing when he’s working in a store and it involves customer interaction.  He also has a ‘typical’ friend who is Pakistani and probably an alter-ego of Rashid herself.  He develops a crush on  his therapist, a 26-year-old clinical psychologist.  Someone that young already having a ph.d., finishing their internship, and being an adjunct professor seems over-the-top. 

The protagonist’s mother appears to be intentionally presented as one of the most unlikable characters you could imagine.  She is overprotective of her son, invades her children’s privacy and commits adultery and then blames her boyfriend for having an affair with a married woman.  Why the show’s creators would not want to make the mother a sympathetic character seems baffling.  Other episodes seem way over the top, including his nearly hooking up with a girl he scares off initially, being insensitive to other girls and people and then being easily forgiven.  One of the most over-the-top things was a sensory dance where the entire school accommodates the protagonist by having a silent dance without a band where the students can listen to music on optional head phones while they dance. 

While the show is billed as the protagonist having women problems, there seems to be a bait and switch tactic where he is actually successful with at least one girl who seems to have some behavioral quirks which might place her on the spectrum, but this is not mentioned explicitly. 

There is no one telling him he should find an autistic girlfriend which happens to us so typically.  Perhaps I should excuse Robia Rashid’s ignorance about the problems that celibacy presents for many autistic males, but it seems a writer should be more aware of a subject they choose to tackle. 

In essence, there is not much compelling about “atypical” and as is typical (ironic use of the word) as it presents a very warped and optimistic view of autism that does not ring true or jibe with real life, seemingly par for the course of Hollywood depictions.   

I was not sure I would watch all eight episodes but I ended up doing so, compelled mostly by the controversy and apparent borrowing from my life in the first scene. This show seems to be getting so much press and traction, I suspect it may be one of Netflix’s golden eggs and there will probably be more episodes but I don’t think I will be watching them and I don’t recommend to my readers that they do so either.

Friday, August 11, 2017

Did Netflix Show "Atypical" borrow from my life?

Netflix and the media have been hyping the newly streamed series "Atypical" for several weeks now.  This show just started airing today on netflix and has already been mired in some controversy and it's highly probable that it will generate more.  The show has a number of pros and cons which may be beyond the scope of this particular post though I may write about them in a subsequent post.

The underlying and unprecedented theme of the show is an 18-year-old boy on the autism spectrum who is a senior in high school who has trouble in relationships but wants to find a girlfriend but has trouble doing so. Celibacy is a major and mostly unpublicized problem for many males (and possibly females as well) on the spectrum.  This is an issue scarcely mentioned in the media.  Much of the exposure of males on the spectrum goes to John Elder Robison, Ari Ne'eman, and Michael John Carley and Steve Shore who combined have seven marriages between them.  This was a compelling enough hook to entice me to watch at least some of the show.  (at this point, I've watched the first four of eight episodes and I may or may not watch more of them).

I was incredibly piqued when I watched the opening of the first episode where Sam, the autistic protagonist, is doing a self-stimulatory behavior he calls "twiddling" where he holds a pencil in his left hand and flexes a rubber band in his left and right hands and describes doing this at a certain frequency.  The camera next pans to his therapist, an attractive Asian woman.  She asks him if he's interested in donating his brain to science.

I've called the self-stimulatory behavior that I do twiddling where I shake some shoelaces while holding a pencil in my left hand while I engage in Walter Mitty (for those who remember the old Thurber short-story and/or possible movie with Danny Kaye) type fantasies for about fifty-five years now, going back to about 1961 or 1962

About four and a half years ago, I was also on an NPR show which talked about a shortage in autism brain tissue and how I donated my brain (regretfully to autism speaks) to science.  I also mentioned my twiddling and described it in that interview.

Bruno Bettelheim in his 1967 book The Empty Fortress also used the term "twiddling" to describe certain self-stims (i don't think the term stim had been invented yet), but he did not use the word "frequency" or describe any of his charges at the orthogenic school using a pencil (though it's been many years since I've read the book so my memory may be a bit sketchy).  Though I used the word "twiddling" as a small child before Bettelheim's book was published, I realize it's unlikely he got the term from yours truly.  It would seem highly improbable that the creators or writers of "Atypical" have ever read The Empty Fortress. 

I'm wondering if it's a coincidence or if they borrowed from my life.  I guess I will never know for certain but it does not seem that probable it is a coincidence though I suppose it is not impossible.

A number of persons, particularly ND's,including Ari Ne'eman, have complained about allistic (non-autistic) persons writing storylines about autism.  But somehow I don't think they're going to go out of their way to help publicize "The Mu Rhythm Bluff" or any of the short stories I have on my website, inspired by my experiences as an autistic person.

Before Netflix released the show, I was contemplating watching it and writing some reviews of it.  I may do this in a future blog post, but I'm not sure.  However, I'll look forward to the ensuing controversy that I'm sure this show will generate in the autism blogosphere and cyberspace.

However, no one will probably care or note that they may have taken some stuff from my life as one of the composites of the autistic protagonist. 

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.  

Wednesday, May 17, 2017

Amy Lutz Provides Neurodiversity Proponents Opportunity to put up or shut up but will they accept the challenge

I've just finished reading an interesting piece by writer Amy S.F. Lutz, the parent of an autistic boy with an intellectual disability.  She challenges the mantra 'presume competence' that is repeatedly uttered by neurodiversity proponents in their zeal to claim that acceptance and accommodations will resolve all of the problems autistic individuals have, no matter how severe their disability is.

Ms. Lutz writes about a woman who claims that parents signing guardianship papers for their severely disabled adult is an abuse of human rights and tantamount to slavery.  She invited the neurodiversity proponent, Theresa Degener, to come to her home and probe her son's (IQ of 40) feelings about what his take on guardianship is and if it is violating his human rights.

Current ASAN president Julia Bascom answers the comment of parents who state that if they could blog as well as she could they'd consider their child cured.  Ms. Bascom inquires if they had ever taught their severely disabled child to write a blog post or given them the correct tools and accommodations to do so.  She seems to believe that any given child, no matter how gravely disabled, regardless of no matter how nonverbal or severely retarded they are is capable of writing a blog post the way she does.  The only reason they can't is because their parents presumed incompetence and failed them.  Ms. Lutz has invited Ms. Bascom to come to her home and work with her son and teach him to write a blog post.  To the best of my knowledge, no member of neurodiversity has done so.  They have only produced a phony baloney PSA video with a nonverbal autistic girl as a cartoon character. showing her typing on a computer with all ten figures, as fluent in language as any non-autistic person, expressing her dislike of autism speaks.  I echo Ms. Lutz's sentiments that if the ND's really have some method for training and accommodating a low functioning nonverbal autistic person that they should stop being so selfish and share it with her and the rest of the parents.  I wonder if Ms. Bascom has accepted her invitation and if no why not?

The most interesting example of all was of the ubiquitous John Elder Robison  who wrote a piece in response to parents who he claims are not presuming competence in their very severely handicapped children.  At an IACC meeting Ms. Lutz asked about housing options for her severely autistic son.  Showing his typical insensitivity and ignorance of the problems of severely autistic individuals he asked Ms. Lutz why her son could not choose where he lives.  In a ROFL example, Robison stated that his dogs are perfectly capable of choosing where they live.  They just roll on the floor and sleep where they want.  Somehow trying to find a group home does not seem to be the same thing as a dog just sleeping where he wants on the floor of a house he already lives in.  Likewise, Ms. Lutz extended an invitation to JER to visit her home and meet her son and ask him where he wants to live.  I wonder if JER has accepted her invitation and if the answer is no, Why not?

I admire Ms. Lutz for her polite responses and her polite challenges to neurodiversity proponents to do something which she knows they are not likely capable of doing.

However, unlike Lutz, I'm autistic, have worse social skills, and am probably older than she is and certainly grumpier, so I'm going to be more blunt.  Theresa Degener, Julia Bascom and John Elder Robison, if you truly believe all these things, then I suggest you put up or shut up.  If Ms. Degener can get inside the mind of an individual with an IQ of 40 and ask him about guardianship, if Julia Bascom can teach him to write a blog post the way she does, and if Robison can have discourse with her son about where he chooses to live, then all the power to them.  If not, I suggest they shut up and abandon this farcical crusade known as neurodiversity.     

Wednesday, April 26, 2017

Are autistics lazy loafers who refuse to work when they can?

As regular readers of my blog know, I've been unemployed for ten years now.  Though I don't know the exact statistics for autistic unemployment I've seen figures bandied about as high as 85-90%.  As the flurry of autistics who were diagnosed in the nineties have become adults, the problem of unemployment among autistics in recent years has become widely publicized.  Parents of these children have become so desperate to find them jobs, that they've influenced major media outlets such as The Wall Street Journal, New York times and others to state that autism is such a great gift to humanity that employers should be begging autistic people to work for them.

This is in part due to autistics supposed superiority in attention to details based on the urban legend that autistics have a superior aptitude for finding embedded figures.  This is despite the fact that the majority of published literature shows no superior facility in this, particularly in those at the higher end of the spectrum.

There is one instance in which retired blogger "the autistic bitch from hell" alleged that autistics who don't work are basically welfare bums who fight efforts by social justice warriors to end job discrimination because they fear losing their government benefits.

Therefore I was interested to read a poorly written article filled with grammatical and spelling errors  by someone named Ron Sandison who states that he's on the autism spectrum even though he has two jobs, including being a professor of Theology and is married and has a child.  He talks about having met Temple Grandin and quotes her as saying that autistics should get off their butts and get a job.  She agreed to attend Mr. Sandison's presentation after he told her about his two jobs.  She stated that there were too many autistics who would not get out of the house and get a job.  She spoke of a 16 year old boy who had never done his own shopping and stated that she was glad Sandison's mother had not babied him the way this boy's mother had.  It seems that Grandin, along with some of other more unsavory members of the ND movement are still trying to bring us back to the Bettelheim era which my parents and I actually lived through.  I was intrigued by this passage in Sandison's piece:

also loved her quote, “Young adults with autism—need to get their butts out of the house and get a job! Work experience can start small walking dogs in the neighborhood or mowing lawns.” When I was fifteen-years-old my dad helped me get a job as a dishwasher at Bell Knapps. I developed social skills and manors (sic) by working in the hospitality industry.

I was recently in a facebook interaction with one individual who commented on this article and stated he admired Temple Grandin and extolled her virtues stating that he supported himself and autistics should work.  I commented that it was easier said than done and another told me I should try.  I pointed out to this individual that I did try like hell for 28 years but was fired from so many jobs and had so many problems I ended up retiring ten years ago at age fifty-one.  He called me a quitter and an enabler and I blocked him.

I'm not a bum and a slacker, I worked in many jobs, had serious problems in most of them before I gave up.  I went to college and could not do well enough to go to graduate school and get a career in psychology or brain research.  I tried to study computer programming and computer repair, but was too disabled to become proficient enough to earn money from them.  I later learned medical transcription.  Though I was good enough at it to work sporadically in clinical transcription (which was easier than hospital work) I had a very hard time on jobs and got fired for making errors and having difficulty getting along with management and sometimes co-workers.  I was able to do one job where I transcribed discharge summaries and history and physicals and consultations, but not usually operative reports, which makes up the bulk of hospital transcription for more than nine years.  I only retired when I got fired from two jobs after this one ended. To imply that I did not try my best is an outrage.

One other man with autism I know tried to work and was fired from a variety of jobs.  He finally had a job at a Home Depot where he had to transport shopping carts back and forth and was fired for doing this with a water bottle in his hand.  They probably did not like his loud voice and hyperactive movements.  Another individual with a math degree I know tried to become an insurance actuary and failed the exam twice.  He later enrolled in a masters degree program hoping to get a job teaching math in a community college.  He was so stressed by the workload he had to drop out after half a semester.

One of the most interesting stories is someone I know worked at Mindspark, one of those companies that you hear so much about in the media that teaches autistic people to be software testers because of their alleged attention to detail.  After working there for a year as an apprentice tester, he was not promoted to an analyst tester and was fired because he had not learned the job fast enough.

I just want to say I believe Grandin should not be so arrogant and insensitive to the fact that very few autistics function at her level and most of them are not going to be able to go out and work very easily.

Since Sandison is extolling her virtues in his article, I can come to the conclusion that he echoes her sentiments and believes that I and other autistic people are lazy loafers who are not trying our best.This is interesting given the fact that Sandison did such a lackadaisical job of proofreading his own writing by spelling manners as manors, omitting commas where they are supposed to go and writing In her message she continually stressed that (in)individuals with autism, academic skills will be uneven.where he omits the word 'in' where it is supposed to go that I pointed out in the paranthesis

Mr. Sandison if you happen to read this I want to say that you should not be implying that I and others on the spectrum who can't be professors or work with psychiatric patients and get married and have a child are lazy because we are much more severely autistic than you are.  I also don't think you should be implying that I and others are lazy loafers when you are too lazy to even proofread your own writing and take pride in it.  Since you're a theologian, I'll remind you of the words of Christ: Only those without sin should cast the first stone.

Addendum: I see since I wrote this blog post that Autism Speaks has has gotten into the act and published Sandison's post as a guest blog. So all the things I've said in this post about Grandin and Sandison go for them too.

Tuesday, April 25, 2017

Possible Autistic board members and/or advisors for Autism Speaks or alternative organization

In the past, one of the chief complaints directed against Autism Speaks was the fact that they had no persons on the autism spectrum as members of their board of directors or in any positions of power in their organization.  After years of not responding to the criticism and inquiries, they finally addressed the issue by putting John Elder Robison on their scientific advisory board along with 30 something parents and scientists.  It did not matter that the other members were physicians or Ph.D. scientists and Robison was a high school dropout with no knowledge of autism science and whose only qualification was that he was well known, having written a best selling memoir about his experiences growing up with Asperger's syndrome.  They also approached Stephen Shore, a well-known spectrumite with a doctorate in special education.  Shore is also a very prolific conference presenter, giving over 100 conference presentations in a year in all four corners of the earth.  Shore scorned their offer (though I don't know which specific position they offered him) stating that he did not want to work with autism speaks until the organization changed its philosophical goals and became more to his liking.

     As most remember, Suzanne Wright leveled some very harsh rhetoric about the disabling aspects of autism and Robison did not like this and resigned from the science board.  Autism speaks went from having one person on the spectrum in their organization in an advisory position to none.

     A couple of years later, the Los Angeles Times published a scathing editorial by journalist and Neurotribes author Steve Silberman criticizing Autism Speaks for a variety of things and for not having any autistics on their board of directors or in positions of power.  He wrote the absolutely ludicrous analogy between Autism Speaks lack of board members on the spectrum with the NAACP being run by white people and not having any blacks in positions of power.  It should be obvious to anyone with a modicum of intelligence that people have autism during childhood and parents take an interest in the welfare of their children, so it makes sense that parents would be on board of directorships and people who are qualified as scientists are the best to be on scientific advisory boards.  Just as there are no students on at least most municipal boards of education, even though they are the ones who are the consumers.
       
     Though the timing may have been a coincidence, not long after Silberman's piece, Autism Speaks reversed its mission statement saying that cure and prevention were no longer part of their goals.  This lead Steve Shore to regard autism speaks as a safe haven and he accepted a position on the board of directors.  Valerie Paradiz was the second autistic person to be appointed to the board.

If having autistic board members is necessary or desirable, do Autism Speaks' representatives fit the bill of good board members or people who are representative of the autistic population? 

Though Robison had behavioral problems growing up and had therapy and special education as a child and had academic problems that lead him to drop out of school, the rest of his life seems fairly normal.  Robison even stated in an interview with Steve Silberman that he was not a disabled person in spite of having an autism diagnosis.  He was able to make a good living as a self-taught engineer, get married and support a wife and child.  He was also able to write a best selling memoir.  Except for participating in some non-clinical trials of experimental TMS and writing about these, he has expressed no interest in the science side of autism.  In addition to his lack of formal credentials he also wrote about studying geek success as a legitimate scientific endeavor and showed a lack of knowledge of even the laws of basic chance when he wrote that the reason for the 4:1 sex ratios of autism in males versus females was possibly because the first born children of parents of autistics were usually boys and then they stopped having children so the girls would not have a chance of catching up.  He also encouraged autism speaks to fund a media project that involved his own son which seems less than ethical.  He stated on wrongplanet.net that autism speaks had reimbursed some of his startup costs, accepting money from an organization where he supposedly just had a volunteer position on the science board.  Despite having written this on wrongplanet, he later denied in a comment to me that he'd ever accepted money from autism speaks and that he just paid for some of his son's videos out of his own pocket and then autism speaks later funded them without giving Robison himself money.

Though Steve Shore was diagnosed autistic at a very young age in the sixties, he was so high functioning he never required special education, he was also able to get married and write a memoir and get a doctorate in special education and make a good living as a conference giver and special education professor.  Except for some mild sensory issues, it's not apparent how autism currently affects him or impacts his life.  He has stated that he's opposed to curing autism, he believes that autism should not be regarded as a demon to be slain with scientific research, but rather something that can be remediated with special education and accommodations.  He recently stated autistic weaknesses could be reframed as strengths.  He's always been vague on the details of how this can be done.

Last but not least is Valerie Paradiz who according to one source stated that autism is not a disability but a strength.  Ms. Paradiz also advertised herself as a Ph.D. autism consultant not mentioning that her doctorate was in German literature, something hardly relevant to autism.  She also started a special school for autistics.  Ms. Paradiz was also able to marry, have and support a child and be a college professor and write a memoir about her son.  She was not allegedly diagnosed with autism until age 40 in 2003 many years after she'd written the memoir about her own son Elijah who is on the autism spectrum.  It would seem strange that it would take this many years for her to be diagnosed and she would not suspect she was on the autism spectrum and obtain an evaluation as soon as her own son was diagnosed.

Are these three satisfactory board members who represent the interests of autistic people and who are familiar with the experiences of a typical autistic?  Gadfly does not believe so.

John Robison has criticized me in the past for only being negative on my blog and not presenting positive solutions instead of spending time complaining about him and other individuals with whom I've had disagreements with.  Perhaps John has a valid point, so I'm going to take his advice in this post.

Assuming autism speaks one day returns to their former position and denounces neurodiversity or another alternative organization springs up, does that mean there should be no persons with autism on the board of directors or in positions of power?  There are individuals with autism who don't like the condition and are interested in pursuing treatments and possibly a cure and don't like or agree with neurodiversity, and I'd like to recommend them for the board of a new AS or other group.

I'll start with myself, though I have not had the ability to pursue scientific research let alone be a scientist, I'm very interested in the subject and would like to find the etiology of autism and use this to find treatments.  I spent eight years in special education, have basically not had a girlfriend except for some light dating stuff, and have bad motor coordination problems, and have been fired from 20 jobs.  Though I've done some writing I have not been able to get published except on Exceptional Parents' website and one article in l.a. magazine. 

The best choice hands down is Roger Kulp, an individual well-schooled in the science of autism, particularly the research involving cerebral folate deficiency that Richard Frye, Jill James and Daniel Rossignol pursue.  He's been a beneficiary of that research himself, having gone from special ed student having seizures to being partially recovered from his autism with Leucovorin and other treatments.  He's had his genome sequenced and found mutations.  He spent years in special education, had problems with elopement and nearly hit by cars, and is on SSI and never had a job. 

Yuval Leventhal is also a good choice having had some special education and pursues botox as a treatment for autism.

Old school advocate Tom Mckean who has experience serving on the Autism society of america's board is also a good choice.  He's interested in finding a cure for autism and has been a critic of neurodiversity and self-diagnosis.

Benjamin Alexander is another good choice.  He's a nonverbal individual who uses augmentive communication to express his thoughts and has said he desires a cure.

All of these people have not been able to marry find girlfriends and with the exception of Yuval have either never had a job or have had grave difficulties in working.

What about the female of the species?  I'm repeatedly told by ND that autism is under estimated in girls because they present differently.  Well a young (30 years old) woman who writes under the pen name Gwen Kansen would be excellent for this.  She does not like her autism and wants a cure and though she's had some boyfriends and I believe is currently engaged, she's had trouble holding down jobs.  She also wrote an article critical of the neurodiversity movement.  Of course Gwen might not want to reveal her real name which she might have to do if she were publicly serving on a board. 

     Another female candidate is Sarah Weatherill, a writer in Canada who states that she hates having an autism spectrum condition, wishes for a cure and does not like neurodiversity.  I don't know anything else about her biographical details.  

I believe all these choices for autism speaks or an alternative organization (assuming autism speaks does not change its ways) would be better than the three board members they've already had, but I guess I won't hold my breath.