Tuesday, September 2, 2014

Kelly Stapleton pleads guilty to attempted murder

I've just read that Kelly Stapleton who attempted to kill her autistic daughter has pleaded guilty to the crime.  I hope this makes Neurodiversity happy.  But I guess nothing short of Ms. Stapleton's execution would please them.  Nearly a year ago I wrote a blog post where I discussed this sad case and Ari Ne'eman's reaction to it.  Ms. Stapleton had initially contemplated entering an insanity plea, but I guess she either didn't want to drag her family through the ordeal or she realized she had no chance of having it fly.  I find it ironic that an organization like ASAN comprised of at least one lawyer, at least one college professor, and graduate students alleging to be on the autistic spectrum and don't seem to do anything to help lower functioning autistics such as Ms. Stapleton's daughter would take such an interest in the case.  Before the media made much of the Stapleton affair last year, Ari Ne'eman and his ilk neglected to comment on the quality of life of nonverbal, violent persons on the spectrum who are at the polar opposite of Meg Evans, Melanie Yergeau, and computer science Ph.D. candidate Scott Robertson.  To the best of my knowledge, they never proposed any solutions to the problems of individuals such as Izzy Stapleton, but only stating that a cure for individuals such as these would be tantamount to eugenics.  

Ne'eman seemed skeptical that the justice system would do their job.  I realize it is premature to say whether this is the case or not as the woman has not yet been sentenced and we don't know what her punishment, if any, will be.  Apparently, she was prosecuted and had no legitimate defense other than alleged insanity which she chose not to invoke.  So apparently Ne'eman's allegation that the media were claiming that it is okay for parents to kill their autistic children didn't stop Ms. Stapleton's being charged with a crime.  

I still wonder why an organization such as ASAN which as of 2011 had 501(c) status can't work to solicit donations so that services exist which may have prevented this tragedy from happening.  This is not to condone what Ms. Stapleton did, but there are still a lot of things I don't understand. 

Wednesday, August 27, 2014

Kim Bodner's RPM vs. Wechsler Study published. What does this mean for neurodiversity?

As many in the autism community know, about seven years ago, Michelle Dawson published a study suggesting that the intelligence of autistics had been underestimated.  She compared the scores of autistics on the Wechsler IQ test versus scores on the Raven's progressive matrices.  On average, the autistics' scores on the Raven's were considerably higher than their Wechsler.  By comparison, a control group of  non-autistic people had similar scores on the two tests.  The neurodiversity movement made much of this, claiming this proved that autistics' intelligence had been underestimated and it showed that "autistics were not write-offs" (Dawson's words) after all.  The media reported that intelligence had been underestimated in autistics.

Some years after this, I was interested to find out that two different research studies had seemed to fail to replicate her results.  Both of them had been presented at IMFAR (International Meeting for Autism Research) but had not yet been published in peer reviewed journals.  I read the brief presentations, but I was still uncertain about everything the studies would say if they were published in a journal.

The first one had been published by Sven Boelte.  I wrote to Dr. Boelte asking him if I could have a copy of the study  and he graciously emailed me one.  Like Dawson, he found that autistics scored higher on the RPM than on the Wechsler, but the magnitude was not as pronounced as in Dawson's study and it was only found in those with IQ's lower than 85 and not at all in autistic persons with higher measured intelligence.  In contrast to Dawson's optimistic statements and those of the pro-neurodiversity media, he gave the more guarded response that it was still too early to tell if intelligence in autistic people had been underestimated and more work needed to be done on the issue.

The other study was done by Kim Bodner, who I believe at the time was a graduate student working in Nancy Minshew's lab.  From reading about the IMFAR presentation, she seemed to be saying that she had found no differences in the scores of the RPM vs. the Wechsler in individuals on the spectrum with normal or near normal intelligence.  Though her study had not been formally published, I also wrote to her and cc'd a copy to Nancy Minshew.  I never received a response from Bodner, but Dr. Minshew wrote me saying she forwarded a copy to Ms. Bodner and they'd let me know when the study was published.  This was over four years ago.

Today, I was surprised to receive an email from Ms. Bodner out of the blue, sending me a copy of the .pdf study.  It took awhile, but eventually her study was published.  I'd wondered if it would ever be published and I found out today.  For anyone inclined to read the entire study, I've uploaded it here

She had studied four groups--autistic children (up to age 16) vs. age matched controls and adults on the spectrum (17 and up) compared to a control group.  She found that in the children with autism the RPM scores were higher than their performance IQs and slightly (but not much) higher than their verbal IQs.  The RPM's of the autistics were higher than the age and Wechsler matched controls but not much so.

The more striking difference was in the adult group where the RPM of the autistics was much lower than their Wechsler  scores and the scores of the RPM of the adult control group.  These findings don't seem to replicate Michelle Dawson's.

It must be emphasized that Bodner's study had the limitations in that there were only two girls in the 37 person children with autism group and 5 girls in the 48 person typical group.  The adult group (where the RPM was low compared to other measures) had a 25:6 male:female composition of the 31 autistic subjects which is probably representative of the ratio in the general population of those on the spectrum.  It would be curious as to how a representative ratio of males to females in the children's group would fare on the RPM.  Also, the autistic subjects were all relatively high functioning (meaning they had IQs in the average or near average range).

The results of various studies support that on average there are higher scores on the RPM than on Wechsler for lower functioning autistic children who have lower than average intelligence and less verbal ability.  But for the higher functioning more verbal autistic children, there does not seem to be any advantage on the RPM.  

For adults on the spectrum, the findings of various studies are less consistent.

If there is any advantage at all on the RPM, it is probably for the lower functioning children who would probably have life problems no matter what intervention or educational strategy is used.  I believe this is more evidence that the ND movement is mistaken that certain tests or abilities are not only superior in all persons with autism, but that this proves they have special strengths in jobs or any other endeavor. 

Monday, August 18, 2014

Is starting a business a solution to autistic unemployment?

As of late, there have been a few articles in the media I've located via entering "autism" as a search in Google news.  These pieces deal with entrepreneurship as one solution to the problem of autistic unemployment.  this article is one example, reporting on two different individuals on the spectrum that started their own business.

Yet another article which features the renowned Temple Grandin's photo as a lead-in, also extols supposed autistic strengths, such as the oft-repeated excellent attention to details that persons on the spectrum supposedly have.  The article claims this makes people with autism suited for various occupations, but is rather vague on what these specific professions are and how superior attention to details can help autistic people start their own businesses and actually make a gainful living.  One of the individuals mentioned in both articles has a son who started a yard work and landscaping company and apparently relies on an assistant to help him with this endeavor.  How yard work is suited for someone with attention to detail I don't understand.

Temple Grandin has weighed in, stating that if more autistic people are allowed to develop their talents and interests, they can start their own business.  Autism Speaks has had town meetings where they've encouraged people on the spectrum to start their own businesses.  This is interesting from an organization almost completely lacking in transparency as to whether or not they employ people on the spectrum in their organization.(I  realize Kerry Magroo and perhaps one or two others are exceptions to this rule).  

A short time ago, I wrote  a blog post where I discussed one of the possible origins of the "attention to details" mantra and why it may not actually be valid for most persons on the spectrum, let alone assisting them in employment.

I've actually had first hand experience with this as an individual on the spectrum who has attempted to start my own business.  In the mid eighties, after I'd been forced to resign from my clerical position at the local phone company, I attempted to start a typing and word processing business.  I lived close to UCLA at the time (I've since moved) which was a prime location for this set up as there are a number of college students who would be potential customers.  I advertised in the daily bruin (UCLA paper) and other places and had some customers.  Though some people were satisfied with my work, others weren't and I lost some clients.  The students usually waited to the last minute before their papers were due to finish them, so the turnaround times were horrendously short.  In addition to the dissatisfied customers, having to accommodate the people was tremendously aggravating and it was far more stressful than having a job with regular hours.  I had a really tough time and finally called it quits and started learning medical transcription around 1986 which I worked in sporadically from about 1987-1988 to about 2006.  My supposed "attention to details" did not help.

Aside from having a disability that might make this difficult, how do non-handicapped people typically fare when starting a business?  I had a friend who was a tree surgeon.  In fact he learned the trade from his father who had a successful tree company starting when he was quite young.  In his twenties, he decided to start his own business.  He had a very hard time, it took him quite a while to establish a clientele and he had trouble paying a lot of his bills.  Many times he contemplated whether it was worth doing and whether or not he should just drop his business and go out and get a job.

Eventually he was able to establish a reasonably successful tree company, but it took several years of capital investment and hard work.

According to oft-cited statistics80% of all businesses fail within the first 18 months of their existence.

Starting a business requires hard work, capital outlay and probably excellent social skills (which are saliently lacking in most autistic persons).  It is really tough going for a non-handicapped person.  Is it realistic for most autistic people?  Gadfly doesn't think so.  

Sunday, August 3, 2014

Organizations to boycott if you don't like neurodiversity and ASAN

Recently, people who did not like the vaccine causes autism movement urged a boycott of Chili's restaurants when they created a fundraiser to help one of their organizations.  The backlash was so great Chili's was forced to cancel their fundraising event. 

Those who don't like Autism Speaks (most of whom have some affiliation with neurodiversity and or ASAN) have suggested boycotting organizations that support AS such as Lindt Chocolates.  Over five years ago, I wrote a blog post mentioning other organizations they could boycott if they did not want to support AS. Recently supporters of a boycott Autism Speaks Movement have asked Big Bird and the rest of Sesame Street to end their partnership with AS.  To the best of my knowledge though, no one has suggested boycotting Wrong Planet, Alex Plank, Jack ("Cubby") Robison, Michelle Dawson, or Laurent Mottron and his other affiliates for accepting funding from AS. 

In my previous blog post of a few days ago, I pointed out that ASAN (The Autistic Self-Advocacy Network) had posted their 2011 and 2012 990 tax forms on line and Ari Ne'eman's substantial salary increase.  I neglected to mention the various organizations that have donated money to ASAN and the one other one who has enlisted high school dropout John Robison to teach a course on Neurodiversity on their faculty: 
1. Dan Moreno Foundation
2. Cafe Press
3. Mitsubishi Corporation
4. The arc (charity giving sizable donation to ASAN)
5. Daniel Jordan Fiddle Foundation.
6. Enterprise Service and Technologies.
7. William and Mary College (not necessarily relevant to ASAN but gives a course on neurodiversity with high school dropout John Robison being one of the adjunct professors)
8. University of New Hampshire
9. Oregon Health Sciences University
10.Special Hope Foundation.
11. The HSC Foundation. 

These are all organizations that should be boycotted or not have money donated to them or products purchased from if you want to crusade against ASAN and the neurodiversity movement.  There may be others that I don't know about and I will post them if I find out about them.  I know I won't be purchasing products made by Cafe Press or Mitsubishi again.  I'm not sure if it is worth contacting any of these organizations and asking them not to partner with Neurodiversity in the future as some of these probably gave ASAN one time donations and may not do so in the future.  Apparently, from reading their 990's, their donations dropped off tremendously in 2012 but they made up their revenue by making nearly $200,000 in "contract services" in 2012 whatever those are.  So this is the list if anyone is interested. 

Wednesday, July 30, 2014

Neurodiversity can be profitable: Ari Ne'eman gives himself a large payraise

Neurodiversity remains a controversial movement and people on both sides of the fence have made a variety of statements about it.  To some it is about basic human rights and/or civil rights for people on the autism spectrum or who have related neurologic disabilities (or differences for those who prefer that term).  Some have said it means an alternative form of brain wiring that is just a natural human variation the way eye color is.  To some parents of autistic children it is people stating that they don't really love their children as these parents have not accepted their offspring.  To those who oppose it, it's about not finding a cure or treatments that they desire.  To others, it is a claim that with the correct accommodations autism would largely cease to be disabling to those who have it  (as well as other brain differences). It can also be financially profitable, at least if your name is Ari Ne'eman.

As recently as 2009, ASAN supporter "the autistic bitch from hell" (who has been rumored to be an alter-ego for ASAN board member Meg Evans) stated in the comments section of this blog post that the board of directors of ASAN, including Ne'eman himself, worked entirely on a pro bono basis and received no compensation whatsoever. This apparently changed just a couple of years later as of 2011. I've learned that ASAN recently posted their 2012 tax return online.  They've also posted their 2011 return as well.  I don't know if they've posted any tax returns of previous years anywhere on line, but if I find out they have I will write a new post or put an addendum on this one.

On reading the two returns, we see that while all of ASAN's board members, with the exception of Ne'eman, continued to be paid no compensation, Ne'eman drew a salary of $40,000 a year for serving as president of ASAN in 2011.  In 2012, he raised his own pay to $65,000, a 62% annual salary increase which is as high an annual pay raise I suspect that most Americans would be glad to have, particularly in these recessionary times.

It could be argued that if Ne'eman's work had brought in a proportional increase of funding and donations then he would deserve this hefty pay increase.  On perusal of ASAN's revenues for the years 2011 and 2012 we see there was an increase in ASAN's revenues of about $280,000 (rounded to the most even figures) to about $376,000.  A 31% increase which is about half the percentage that Ne'eman raised his own salary.

Over the years, one of ASAN's main goals has been to attack the organization they loathe so much, Autism Speaks.  One of their complaints about AS has been the high compensation that some of the executives of the organization receive at the expense of autistic people who are denied the appropriate services or supports.  I don't have AS president Liz Field's current salary handy nor the revenue that autism speaks made in the year 2012.  It seems far fetched to me that her salary would amount to more than one-sixth of autism speaks total revenue which is the case of Ne'eman's ASAN salary for 2012.

Over the years I've criticized Ne'eman for giving advice on how autistics can find and keep employment when he had never actually worked.  Matt Carey of the Left Brain Right Brain blog disputed what I said, claiming that Ne'eman's presidency of ASAN constituted legitimate work.  At the time, I believed this statement to be fallacious because of what ABH wrote in the comments section of her post on the whose planet is it anyway blog.

I stand by my statement that Ne'eman has never worked a conventional job where you actually do something in the for profit sector or even a regular job where you have to go in and do some sort of work, even if it is for the government.  Of course, I do admire his ingenuity in being able to start a charitable organization and raise his own salary by an amount double the increase in the organization's revenue.

One can only hope this continues to be the case.  If Ne'eman's salary increases continue to outpace ASAN's revenue increases by the same amount, in the next several years ASAN's liabilities will exceed their assets and they will become defunct.  Then perhaps we can have sane commentary on autism from people who really want do to something to help people such as myself and have constructive ideas on how to do so. 

Sunday, July 27, 2014

Why "The Gimmick" probably won't work for me

People who have followed my blog or my other adventures over the years know that one of my lifelong dreams was to write novels and have them be commercially successful. 

I'd hoped to achieve that goal by using something I called the gimmick, which meant that I'd use my disability to get a novel published and help promote it. 

Over the years, autism has become a hot topic in the media as anyone who is interested in it well knows.  So, why not an autistic novelist who writes novels about autistic subject matter not be something that a lot of people in the general public would lap up and take an interest in? Why can't I be on Oprah (or equivalent as I guess Oprah is doing some other gig now), sixty minutes, the today show, various NPR shows such as Fresh Air and All things Considered, and, as a result, sell novels by the truckload and then have my second (and only self-published) novel, "The Mu Rhythm Bluff" made into a major motion picture?  In my own particular case, (just talking about myself and not necessarily another aspiring autistic novelist) there are likely a variety of reasons why not, which I'll discuss in this blog post.

In previous posts, I've written about my trials and tribulations as a writer, but I'll repeat those here in case anyone hasn't read my previous posts or is interested in having their memory refreshed.

When I was about thirteen, during my last year of special ed, I decided I wanted to be a writer, particularly a novelist, though I hadn't read a great many novels at the time.  I'm not sure what made me want to be a writer or when I exactly decided it.  The following year, at age fourteen, I was finally mainstreamed in regular school.  I decided to attempt to write my first novel about two boys with mental retardation who befriend each other and overcome the stigma society had placed on them.  Writing a novel would seem something extraordinary for even a typical fourteen year old.  However, at that time, I was a fourteen year-old boy who had  had virtually no mainstream education (the exception being a regular private school I attended for half a semester before being expelled for behavioral issues, a couple of years before I permanently left special ed).  I was too handicapped and disorganized at the time to write more than about 50 single spaced pages of this novel.  My disability made it hard for me to do much of anything and I spent a lot of time twiddling (self-stimulatory behavior).  I made other attempts to write novels during a tumultuous adolescence, including "Going Through the Doors" about a neurotic teenager who attempts to solve his problems through LSD use and gets involved in Vietnam demonstrations.  "Going through the doors" is the most recent novel I've written, but more on that later.

I finally gave up on trying to write a novel as I struggled through college, though the dream never went away as I had a few ideas for stories, but my autism made it so difficult for me to do any executive planning or get tasks done.

Many years later, in my late 30s, I became friends with an individual with schizophrenia who was a prolific and gifted short story writer.  I told him I'd wanted to write a novel but couldn't do it.  He suggested I write short stories instead as they did not take as much effort or duration.  It sounded like a good idea and I ended up writing sixteen of them.  I tried to get them published without any success.  I got a few encouraging rejection slips which made me think I had some talent as a writer.  Glimmer Train stories, one of the more prestigious places you can get a story published wrote, 'quite a moving piece, enjoyed it' on the rejection slip after I submitted my story, "Mr. Twiddle" to them.

I still wanted to write a novel though and I began work on "The School of Hard Knocks", my first novel.  I took a private writing class with a teacher who I later learned was a less than ethical individual.  He told me I'd written what was the makings of a good novel and said he believed that one day it would be published. 

I also met fellow participant Tamar Brott, a freelance journalist who wrote for Los Angeles Magazine and also did radio shows for NPR.  Her work had been broadcast on Studio 360 and This American Life.  I told her about the gimmick and what it meant and this intrigued her.  She thought it would be a good idea for a radio show on This American Life.  She pitched the story to the producers, including the renowned Ira Glass, who loved it.  She interviewed me and told me the show would be a done deal.  The Teacher of the Literature reading and writing course told me this would guarantee that my novel would be published.  I was already beginning to count the chickens of stardom before the eggs had been hatched.  This American Life decided not to run my show as they believed the way Tamar had written it was too negative.  I would not get to be on national radio and the gimmick would fail to come to fruition. In spite of this,  I submitted the novel to several agents.  Susan Ramer took an interest in reading the first 100 pages and then rejected it, as did nine other agents. 

By this time, I'd moved on and had taken a copule of novel writing courses at UCLA extension and had some freelance editors look at the school of hard knocks.  They all agreed it needed major work and one editor even went to far to say it would be a waste of time to edit it.  Tamar was subsequently able to get our show aired on Studio 360, another NPR show that takes on topics in the arts, though they don't have as big an audience as This American Life.  This did not result in any publishers or agents approaching me and I realized it would have been a fool's errand to approach them with this particular novel as it stood.   

Though devastated, I'd learned an important lesson.  In order for the gimmick to work I needed to have the goods, i.e. a novel ready for submission for publication that would hold reader's interests.  The School of Hard Knocks had failed on this front.  This is the first reason the gimmick probably won't work for me.  Though I've evolved a bit as a writer, the writing has to be good enough to rise above the rest of the slush pile and I'm not sure I'm capable of that.  A few people though did tell me they loved "The Mu Rhythm Bluff" and I'm gratified for at least that.  

Some years later, I wrote "The Mu Rhythm Bluff" my second novel.  Hopefully I'd learned some lessons about writing since "The School of Hard Knocks"  I submitted it to nine agents and was rejected.  Only one or two even bothered to answer me, unlike several years previously when I briefly shopped the school of hard knocks around and every action wrote me back saying they were stepping aside.  I'd learned that because of the internet and digital publishing there had been great changes in the industry.  As difficult as it had always been for a new writer to break in, it was now all but impossible.  The only upside was that with the advent of Amazon's create space and kindle direct publishing plantforms, self-publishing a novel and selling it had become a much more viable option.  I decided to go with this one. 

I wrote to reviewers, studio 360 whose show I'd been on before, Oliver Sacks and some others and they all rebuffed me or did not answer me.  There, were of course, others in the autism field who might have been able to help me out, but I didn't care for Temple Grandin, Simon Baron-Cohen, the people who believe that vaccines cause autism and least of all for the collective membership of the neurodiversity movement. 

Another individual I'd met from the autism world who'd  taken an interest in me was Steve Edelson who had taken over running the Autism Research Institute.  I disagreed with him on many points, but still maintained a friendly relationship with him. 

Though many studies had refuted secretin as an effective autism treatment, Edelson still pushed this (not to mention many other questionable autism treatments) as a legitimate treatment.  I wrote some unfavorable blog posts about secretin and Edelson's positions on it.  I emailed him telling him about this and he was rather appaled and that ended our friendship.  He's not someone who I really could ask to help me publicize my work. 

I contacted autism speaks by email and told them about it and never heard back from them.  I've been a harsh critic of autism speaks in the past so that may have had something to do with it. 

I tried to contact the autism society in Maryland but just got an answer machine and apparently getting a human to return your call from them is difficult.  I'd been very critical of them in the past though for having endorsed Ari Ne'eman's appointment to the NCD as well as having Alex Plank as their keynote speaker at one of their conferences one year and maybe that had something to do with it. 

I did contact the L.A. chapter and they featured me in a newsletter in the beginning of July and I sold 6 books since July 1 probably because of that article, so it probably helped me somewhat. 

So, in sum, I either have had poor relations or made outright enemies with the group that has the most potential to help me publicize my novels.  This and the fact I may be incapable of writing a publishable novel are two of the main reasons why the gimmick probably won't work for me. 

Another reason is that if they wanted to use someone in a gimmick, they might want someone younger and sexier than myself.  Now that I'm nearly fifty-nine years old, I really don't fit that bill. 

I've now written "Going Through the Doors", one of the novels I'd attempted to write in the 1970's during my adolescence.  Though I'd failed to be able to write it at the time it would have been contemporary fiction, I'm sort of glad I wrote it later in my life.  It seems far more interesting to have written it as a historical novel as a man in my late fifties than it would have been to have written it as a present day novel in my teens.  At this point in time, I'm submitting GTtD to the internet writer's workshop where some beta readers are pointing out ways I can edit it and improve it so that it is either ready for submission or self publication.  I'm still not sure what I'm going to do with it.  I'm not sure if there is any point in submitting it to a publisher, agent or self publishing it on amazon's KDP and create space platforms.  One of the reasons why using the gimmick for this probably wouldn't work is because it has no relevance to autism and for a novel by an autistic novelist to get attention it would probably have to have an autism-related theme the way "The School of Hard Knocks" and "The Mu Rhythm Bluff" did, aside from the fact I've managed to piss off the majority of the autism community, my novels may not be good or publishable and I'm an unsexy 58-year-old. 

I'm currently working no a novel length version of my short story, "Dog Bites Man" but this has the same problem as "Going Through the Doors" in not being autism related. 

Other options I have that I haven't explored yet are to have business cards made up of "The mu Rhythm Bluff" and maybe going to some autism conferences and handing them out.  I'm not sure when I'll do this though, as I still have problems with organization and executive function in spite of the fact I was finally able to write a few novels well into middle age.  

I have no regrets though.  As superficial a person as I am, I'm not going to be an obsequious yes man just to get some books published and/or sold. 

Hopefully I'll be able to continue writing for the remaining years I have left on this planet.  I'll still write for the joy of writing, but it does not look like the gimmick will work for me. 

Friday, July 25, 2014

John Tucker interviews me on his author blog

I've been interviewed about "The Mu Rhythm Bluff" on John Tucker's blog.  John is a fellow novelist whom I encountered in the online internet writer's workshop where we've spent time critiquing each other's work.  He was a great help in my being able to make "The Mu Rhythm Bluff" into as good a novel as possible based on my first rough drafts.  Well without further ado, you can read the entire interview here