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 couple 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

Tuesday, July 22, 2014

Jenny McCarthy's son bullied

I've just read an article that saddened me a good deal about Jenny McCarthy's son being bullied due to his autism.  What was even sadder is that he apparently lacks the social understanding to know that he's being bullied.

Ms. McCarthy has generated a great deal of controversy in the autism community due to her stance that vaccines cause autism, and, for that reason, a lot of people were outraged when she got the job as one of the anchors on the television show, The view.

On a side note, I met the former playboy centerfold at an autism conference about six years ago that my friend Steve Shore was presenting at.  She had recently appeared on the Larry King show stating that she had never met an autistic adult.  Steve, another friend of Steve's and mine, and myself introduced ourselves to her.  I pointed out that now she had met some autistic adults.  Her response was, "you guys are awesome."

I think about all of the bullying I had to endure growing up as a child due to my autism, so this article hit home with me.

What is sadder was McCarthy's view co-host Whoppi Goldberg's inane suggestion that she discuss the problem the the bullies' parents.  Somehow I don't think she's going to be able to meet every parent of every kid her son might come across.  I wish I had a suggestion for Jenny but I don't.

Usually, I was aware that other kids were bullying me, except occasionally when some girls in junior high (called middle school nowadays) pretended to flirt with me and for a while I did not understand they were making fun of me.

Bullying is not a real problem for me nowadays, though the pain does not go away very easily, even after decades.  I still get bullied occasionally by some of the less than savory members of the neurodiversity movement.  I just try to shrug it off, though occasionally I did rise to their bait.  I regret it now and hope I won't do it again.  But that's okay.  I realize it's the price I have to pay for daring to publicly say I want a cure for autism to be available and that I believe autism is a horrible disability and actually having the flippancy and chutzpah to write it on my blog.

Though I realize Ms. McCarthy has been a controversial figure in the past and is unpopular with some people, we should still have sympathy for her and what her son are going through and it is truly shameful that this has to happen.  Regardless of how anyone feels about McCarthy personally, they can still feel sadness about what is happening to her son and what sort of life he may lead as he grows older and will likely have to endure more of this. 

Other than making bullying a psychiatric diagnosis in the DSM, and sending bullies to a segregated special ed school just for bullies,  which I've suggested doing in a previous article I wrote , I'm not sure what can be done. But reading this did make me sad and think of the bullying I had to endure in my youth. 

Thursday, July 17, 2014

My meeting with Marco Iacoboni

I've previously written about my interest in mirror neurons and their possible involvement in autism. I've also written about Marco Iacoboni, the UCLA neuroscientist who has done a lot of the pioneering research on mirror neurons in humans. These are neurons that fire, both in response to performing an action such as a hand movement, but also fire when observing a hand action. These neurons are also associated with mu rhythms, brain waves found over the prefrontal motor strip. These rhythms are suppressed in both typical and autistic people when they observe a motion of their own hand. They are suppressed in typical people when observing the movements of others. In autistic people mu rhythms still occur in the brain when they observe movements of other people. I won't go into all of the minutia here. If anyone is interested, I've written a more detailed post about this here Dr. Iacoboni has also done work in TMS (transcranial magnetic stimulation) where a magnet is put up to the brain and stimulates it by creating a voltage so that a group of neurons will have action potentials so that various areas of the brain can be enhanced or suppressed.  Though I don't know a whole lot about TMS, it's an area of research that interests me.  It was my interest in these subjects that partially inspired my novel, "The Mu Rhythm Bluff".   

After I read Dr. Iacoboni's book, Mirroring People, I sent him an email asking him a few questions I had about the book and the field of mirror neuron research.  He was very gracious and answered my questions. At various times I've exchanged email with him.  Later, we became friends on facebook.

Due to loneliness from my autism, from time to time I take advantage of the chat feature on FB and message people.  Not everyone is into chatting in real time when they are on FB, but Dr. Iacoboni would sometimes chat with me.

There's been a growing interest in using TMS to research the autistic brain or even as a possible treatment for autism.  Manuel Casanova has been one of the people to do research in this area.  Also Harvard researchers Alvaro Pascual-Leone and Lindsay Oberman have worked with TMS.  Peter Enticott in Australia is another scientist in this field. 

Iacoboni and his colleagues are now possibly interested in doing research in this area also.  Therefore, he thought it might be good if I could meet him and some of the people in his lab so they could get an exposure to a high-functioning person with autism.  So, yesterday, I went to the lab and met the people.  They asked me some questions and I gave "The Mu Rhythm Bluff" a plug. 

Next, Dr. I gave me a brief tour of the facility.  There has been some research (though I admit I'm not familiar with most of the details) suggesting that under connectivity in the brain may be one of the causes of autism.  That is neurons with very long axons that would connect distant parts of the brain with each other may be underdeveloped in autism.  Dr. I seemed to believe that with TMS treatments they could improve the connectivity distant areas of the brain have with each other in autistic people.

One of the problems with TMS may be the magnetic pulses don't reach more than two inches into the brain.  Some of the deeper structures of the limbic system, such as the amygdala and the hippocampus, which may be involved in autism lie deeper than this.  However, there is a theory that there is a so-called "cascading effect" where various areas of the brain are interconnected to each other.  This is why Manuel Casanova chose to stimulate dorsolateral prefrontal cortex in his subjects.  Because it was an area of the brain interconnecting many other parts, aside from the fact that his postmortem autopsies found minicolumnar abnormalities in this area.

Of course, no one knows exactly what is going wrong with the autism brain, so which areas to stimulate or inhibit may not be viable option for research.  

I'm not sure if TMS will ever be an effective treatment for autism, but I would very possibly be interested in being a research subject in this endeavor.  I don't know if I will be or not, but I'll post future developments in the blog. 

I enjoyed meeting Dr. I and his staff and hope to see him again some day.