Monday, April 4, 2016

ASAN's 2014 tax forms out: Ari Ne'eman's salary more than doubles in less than four years

ASAN has recently posted their 2014 tax return.  Though ASAN started in 2006, they were not granted 501(c) tax exempt status until 2011.  On reviewing their 2011 return we see that Ne'eman paid himself a salary of $40,000 a year for running ASAN.

In 2012 Ne'eman raised his own salary to $65,000 a year, a 62% increase, while the organization's revenues increased by only about half that percent.  Interestingly enough, one of ASAN's and neurodiversity's talking points against autism speaks was the high compensation that some of the executives at AS received.  In 2010, Autism Speaks' then president Mark Roithmayr was paid a salary of $400,000.  He in fact had a five year contract for two million dollars.  Neurodiversity and ASAN in particular made autism speaks out to be a bunch of greedy pigs who were taking money from the autism community by paying their president so generously.  However, one has to look at the bigger picture.  Roithmayr was paid $400,000 a year in 2010 out of more than 50 million dollars in revenue.  In 2012, Ari Ne'eman was paid $65,000 a year out of about $375,000 in revenue.  This means that Ne'eman's salary was nearly twenty times higher than Roithmayr's in ratio.

In 2013, Ne'eman's salary was $71,000 a year, though a more modest increase, it was still more than 10% in one year.

According to the latest 2014 figures, neurodiversity has still been as profitable for Ne'eman as ever as his annual salary was $80,000 or $83,588.00 including all of his compensation.   

This means that his salary more than doubled in four years (or maybe technically less time than that).  He's received an average annual salary increase of more than 25% a year since ASAN was granted non-profit status by the IRS.

In 2012, proportionately Ne'eman's most profitable year, about 17% of ASAN's revenues went to pay his salary alone.  In 2014, ASAN's revenue was $765,282.00, so even though a lower proportion went to pay his salary in 2014, it was still more than 10% of the organization's total revenue. 

If you look at one of their two accomplishments in terms of what the organization has done, trying to provide better health care options for autistics, you see that less money was spent on that than on Ne'eman's salary.

On public advocacy, they spent more than $360,000.  I wonder if this includes airfare tickets to various autism speaks walks where it is known certain ASAN supporters go to harass parents who are trying to raise money to help their kids.

We see that more than a third of ASAN's revenue in 2014 was spent on employee salaries and other compensation.

Are Autism Speaks the only ogres who are ripping off the autism community or is there a certain pot calling the kettle black?

I wonder when congress will get some common sense and change the laws that make it so easy for people to start a charitable organization and get nonprofit status from the IRS and give themselves such huge compensation rather than helping those in need.  

Thursday, March 10, 2016

Will neurodiversity protest and war against the Simons Foundation genetic database?

Going back to the days of Cure Autism Now in the late 90's and early 2000's, neurodiversity proponents have protested research into the genetics of autism, claiming that it would result in a prenatal test that would lead to mass abortions of autistic fetuses, such as what takes place with Down's syndrome, spina bifida, and perhaps other conditions that are far easier to detect in utero.

Amanda Baggs and Laura Tisoncik, proprietors of autistics.org, had on the main page of their website a cartoon depicting a trashcan with the letters CAN written on it with an abortion clinic building in the background with a crude drawing supposed to represent an aborted autistic fetus with the caption "the real meaning of autism prevention".  Ari Ne'eman has stated that he fears genetic research because it could lead to genetic testing.  John Robison in a speech to IMFAR expressed concern that so many autistics he knew worried about these tests, though he acknowledged the possibility that it was the furthest thing from the genetic researchers mind.  Meg Evans (writing under the pseudonym Bonnie Ventura) predicted in 2005 that in ten years' time there would be a prenatal test for autism.  She proved to be a poor prophet.

Years later, Autism Speaks in collaboration with Google initiated the Mssng project to find missing autism genes and developed a database of autism genes which all researchers would access.  This resulted in a flurry of protest on twitter and perhaps other social media.  #notmissing hashtags popped up on neurodiversity tweets and John Elder Robison joined in the fray.  Neurodiversity took offense to the notion that they could be missing and that Autism Speaks was somehow insulting them.

What's interesting is in that all of the years that Neurodiversity has been ranting and raving against CAN and then Autism Speaks, I've never heard a peep out of them about the Simons Foundation or the Simons Foundation Autism Research Initiative.

James Simons is a mathematician who applied his research findings to the stock market and created an extremely lucrative hedge fund that averaged more than thirty-five percent annual returns.  This, at least in part, resulted in him accumulating a net worth of around 17 billion dollars, making him the 88th richest man in the United States according to the latest Forbes 400 listing.  He has an autistic daughter named Audrey who I think is in her twenties now and is at the milder end of the spectrum (anyone is welcome to correct me in the comments section if I'm wrong about this).

With his huge wealth he created a foundation in his name to do research in education, health and other matters.  This included something called the Simons Foundation Autism Research Initiative (abbreviated SFARI).  Though Autism Speaks is a far more prominent and well-known organization than SFARI, Simons is a larger funder of research than AS is.

What is noteworthy is this story about SFARI's introducing the new genetic database which is certainly not dissimilar to the one that Autism Speaks created with Google's help and from neurodiversity's point of view could just as easily result in a prenatal test and abortion of autistic fetuses.

As can be seen  from this ten year old article in the wall street journal Jim Simons gave geneticist Michael Wigler a nearly 14 million dollar research grant to find genetic causes of autism.  They were also friendly, vacationing off the coast of Greenland together.

Wigler's (as well as colleague Jonathan Sebat's) research is interesting in that it seems to find that a fair amount of autism is caused not by genes that are adaptive and stay in the population, but in spontaneous mutations that are not inherited.  This provides some evidence against the neurodiversity dictum that autistic genes stayed in the population because they offered some sort of advantage and that autism is a natural variation that has always stayed in the population, or that elimination of autism would result in a sort of genocide.

So, one has to ponder why neurodiversity is not at war with the Simons Foundation.  Why aren't they calling out Jim Simons as a greedy tycoon who takes money away from autism communities, so that services, research on AAC, and other pet projects of ASAN aren't being done?  This is a complaint that ASAN has lodged repeatedly against autism speaks.

Gadfly must concede that one of the differences between Autism Speaks and the Simons Foundation is that in order to obtain revenue, autism speaks must engage in advertising.  Some of this advertising has been offensive to those in the ND movement.  They were angry about Allison Singer's dumb remarks about driving herself and her daughter off a bridge, they were angry at Suzanne Wright's statements that autism families were not really living (resulting in Robison's resignation from their science advisory board), and they were horrified at the I am Autism video.  The Simons Foundation is independently wealthy thanks to all of Jim's billions and they don't need to engage in this sort of publicity so they won't provoke the ire of ASAN, GRASP, and the rest of ND.

One of the problems with this line of thought though, is that genetic research, particularly databases which all scientists will have access to, regardless of whether it is funded by Autism Speaks, the Simons Foundation or anyone else will have the same result.  If Autism Speaks research could result in prenatal testing, so could Simons'.  If Autism Speaks are a bunch of ogres who are ripping off the autism community, then Mr. Simons is just as culpable.

Or perhaps the real answer is that neurodiversity doesn't really care about the issues of genetics or prenatal selection.  Perhaps they just have low self-esteem due to mental problems or this is just the type of people they are.  Perhaps Autism Speaks' advertising only reminds them of what they hate in themselves.    

Tuesday, March 8, 2016

Silberman ASA conference keynoter: autism society of america sells out to neurodiversity again

                 
 
                            
The Autism Society of America is the oldest autism organization in the United States.  They go back to 1965 when Bernard Rimland and Ruth Christ Sullivan decided that an advocacy organization was needed.

I joined up with them in the early nineties, well before neurodiversity was invented or before almost anyone in the united states had even heard of Hans Asperger and there was such as thing as "Asperger's Syndrome".  I went to one of their picnics and a couple of their board meetings that were open to the general public.  I spoke on a panel in the very early nineties right around the time operation desert storm started in Iraq.  There was a good thing about being involved in this organization and being able to go to some autism related meetings.  I met my friend Jerry Newport shortly after that, after he'd seen Rainman and decided he was similar to a real life Raymond Babbit with his mathematical savant skills.  In those days, autism organizations were dominated by parents and Jerry and I would be the only ones on the spectrum who attended the meetings.  This made me feel a bit awkward, but the parents were always interested in my perspective.

Not long after this, Jerry, some other people, and myself formed AGUA (Adult Gathering United Autistic) in 1993, an organization for autistic people to meet monthly and socialize--probably the first group of its kind ever.  This organization would provide the inspiration for the group RASCAL in my novel, the Mu Rhythm Bluff.  More significantly, the group provided the inspiration for the movie Mozart and the Whale.  I went to some of ASA's conferences and met some nice people and had a few good times there.  I would read their newsletter, The Advocate, when it came out.  So to this day, I have some nice memories of ASA.

Another good thing about ASA was they included autistic voices in their perspectives.  Temple Grandin served on the board of directors.  She was followed by old school advocate Tom Mckean who disagreed with neurodiversity and favored a cure for autism.  Some years later, when Stephen Shore arrived on the scene and began his ascent as conference mega superstar, he became a board member also.  This made them immune to neurodiversity's hate mongering complaint that they've repeatedly leveled against autism speaks about there being no autistic board members prior to Robison's appointment to their science committee and Steve Shore and Valerie Paradiz's appointment to the board of directors.  

As neurodiversity's tentacles and influence began to get a footing in the autism world, all that would begin to change.  Red flags waved as the Autism Society of America endorsed Ari Ne'eman's appointment to the National Council on Disabilities, despite protests from The Age of Autism folks, Jon Shestack, and others like myself who loathed neurodiversity.

Next they had Alex Plank as a keynote speaker at their annual conference.  This is an individual who has stated that autism is a good thing.  He bans anyone who disagrees with neurodiversity or levels any sort of criticism of him from his website, Wrongplanet.net.  Even worse, when one of the members of Wrongplanet, William Freund, threatened to murder people, Plank did not report this to the authorities.  Freund carried out his threat and murdered two innocent people before committing suicide.  Another member of wrongplanet, Hans Petersen, murdered his dermatologist.  Even though the relatives of the people Freund killed sued Plank, another member of wrongplanet threatened to go out and murder people with a gun and Plank did not delete the post and this person remains a member of WP in good standing.  When I emailed Plank asking him to report this person to the authorities, my query was unanswered.  I contacted the FBI and only then did Wrong Planet delete this person's post.

As you can see from the above screenshot photo, they're having their 2016 annual conference in New Orleans this summer and their keynote speaker is none other than the great Steve Silberman.  The individual who stated that an autistic brain compared to a non-autistic brain was no more broken or different than a computer that had linux as its operating system rather than Windows.  The man who stated that disability is part of the human experience and that we all became diaper wearers, so it was no big deal that some severely autistic children are incontinent.

Silberman is to be accompanied by a panel of autistic people for a discussion accompanied by his keynote speech.  I wonder what sort of autistics these people will be.  Will they be people like Landon Bryce who admit they are self-diagnosed yet say autism should not be cured and that people who support autism speaks and a cure are eugenicists?  Will they be people like Nick Walker who states the same thing but is completely functional and is able to work and get married and support a wife and a child?  Or will they be people like Roger Kulp, who's intelligence is intact and verbal, yet who have suffered tremendously from their autism and want to let the world know so that we can pursue treatments and maybe *gasp* even a cure?  My guess it will be more likely the former rather than the latter.

Apparently it is about the bottom line and almighty $$$$.  Silberman's book made the NY Times Bestseller list and he's still widely known in the autism world and they apparently want money in their organization rather than doing the right thing.   

I believe an autism society should not support neurodiversity.  They should say  someday we hope we can have a cure and treatments for this disease and it will be a thing of the past.  Someday we hope there won't be a need for conferences like this.  That autism will no longer exist and defenseless children will no longer be crippled and sick.

I suggest people boycott the conference this year or boycott ASA until they get their act together and stop supporting neurodiversity.  Or, at the very least, walk out of the auditorium as Silberman and his merry band of mischief makers who claim to be autistic start giving their spiel. 






Saturday, March 5, 2016

My panel participation at Stanford



"Life's like a box of chocolates, you never know what you're going to get" were the famous words of wisdom pontificated by Forrest Gump.  That's been true in my case also.  Though I'm now sixty (a sexagenarian without the sex) my life in the autism world continues with interesting adventures.  My latest one was an invitation a couple of months ago to participate in a panel discussion on autism at Stanford University sponsored by their chapter of Autism Speaks U, the university clubs that Autism Speaks sponsors.

I was nervous and apprehensive about the trip as I don't do well in travel situations and I wanted to save money by taking the train from San Jose airport to Palo Alto, but ended up biting the bullet and taking a taxi.  Also, nervous about getting to the hotel at night, and not knowing what to do with nearly an entire day to kill in beautiful downtown Palo Alto.  I did manage to kill some time walking around the area near where Stanford university is and explored it.  

Another reason I wanted to take the trip is I have cousins who live in nearby Berkeley and I could spend an additional night and day with them after I finished my business at Stanford.  They were also interested in coming to hear me speak on the panel.  They were very happy to make the nearly 40 mile commute from Berkeley to PA and take me back to their apartment with them, so I wouldn't have to spend the second night in a motel.

The person organizing the event asked me for recommendations for other panelists and I gave them Roger Kulp's name, but there was no way they could afford to pay his travel expenses and I'm not sure he wanted to do it, so he declined.

They also invited well-known superstar Steven Shore who also expressed an interest in doing it.  Steve is well known on the conference circuit and is able to command high speaking fees, but he's willing to waive them for the right cause.  However, his travel expenses were also prohibitively high for this student group who only has limited funds.

So, there were three panelists, myself included.  The other two panelists included Melissa Collins-Porter who has an interesting documentary in the works, called Aging Out which deals with the bleak prospects that autistic individuals over the age of 21 face when they age out of the special education system and have to face the cruel world.  Melissa's autistic son is 16, so she's someone who has a loved one who is imminently facing this scenario.  You can see her on my right in the above photo.  She sat at the end so she could access her computer more easily when it was her turn to show a trailer from her documentary in progress.  You can see it from the link.

The third panelist was Nate Majors, a young (24 years) man with autism who engages in self-advocacy. He's local to the Palo Alto area.  His mom accompanied him to the panel.  Nate is currently in an accounting internship at PG&E in San Francisco.  He seemed to have a slight speech impediment, but is overall a pretty functional autistic.  He's sitting on my left, a bit further away from me and Melissa.

They served some good pizza and bagels and I helped myself to a piece of pizza.  It was a pretty good turnout, about 30 people showed up, mostly Stanford undergraduate students. 

They asked some interesting questions, including some stuff about the cure debate.  Nate did not want a cure for himself.  Melissa did not want a cure for her son, though she seemed to want to end his OCD symptomatology and some other problems, so she seemed to want to have it both ways.  Wanting to have your cake and eat it too as my former psychoanalyst used to say.  I gave my more nuanced view as of late, stating that though I longed for a cure for autism, I realized it was not a realistic goal in my lifetime and repeated what Andrew Solomon stated in "Far From the Tree" that it was sort of like a debate about intergalactic space travel. 

They also asked about what we felt people should know about autism and I stated I felt the media should know we are not all savants and we don't have these superior abilities that make us great with computers and will translate into a lucrative career and that we could not all multiply four digit numbers in our heads or knew whether a one-hundred digit number was prime or composite.  That got a few guffaws from the audience.  I also stated people should try to fix us up with dates and friends and this struck an amusing cord with the college students.  Overall I seemed to elicit more reactions from the audience than the other two panelists. 

Amusingly enough, one of the questions was from a quote of one of my favorite autism writers, John Elder Robison about how autism was both a gift and a disability and it was the fire that stoked creativity and also burned us and whether or not we agreed with him.  A wry smile came to my face as the moderator asked this question.  She had read Autism's Gadfly from time to time and that was how she had heard of me and wanted to invite me to be a panelist.  I couldn't help wondering about the possibility that she had seen some of the scathing remarks I've leveled at Robison here from time to time and was trying to bait me.  I tried to show some restraint, as I could easily get a bit carried away in any discussion about Mr. R or even a quote he had made.  I stated that I did not agree with his quote and that autism was not a gift in most people but a horrible disability and 99.9% of us could not learn engineering without a college degree, start our own car repair business, get married three times, and write a best selling memoir.  I again expressed skepticism of how Robison could possibly merit an autism diagnosis when he's stated that he no longer has any disability. 

Overall, a good time was had by all.  Though I did not completely agree with Melissa and Nate about a cure and neurodiversity, we established a rapport that evening and Nate expressed a desire to keep in touch with me. 

I really detest traveling and flying on airplanes (particularly with the creation of the TSA in recent years) and that is one of the upsides of my lack of success as a writer and autism individual.  However, success is a double edged sword.  In order to get the word out, sell books, or whatever endeavor you want to do in the autism world, you have to travel, possibly all over the country or world, to become well-known.  Temple Grandin, John Robison, and Steve Shore travel constantly to get their views out.  So, I hope I will be afforded other opportunities like this in the future so I can get the word out about what a terrible movement neurodiversity is and that we need to do research to do things to help autistic people and eventually try to find a cure although that is not a realistic short term goal.

I guess I can't count on too many opportunities like this in the foreseeable future, but I guess I'll have to wait and see what mysterious candy flavor comes up in Gump's metaphorical box. 

Friday, February 12, 2016

Donvan and Zucker's bizarre take on the politics of autism

For the past few days, I've been a fan of John Donvan and Caren Zucker.  I read their book, "In a Different Key" with enthusiasm.  One of the best books on autism I'd read in a long time.  Last night, I saw them speak at UCLA.  I briefly chatted with John Donvan who thanked me for coming to see him and was flattered when he told he that he'd read my blog on numerous occasions. However they've written a take on what politicians should say about the a word that I find disillusioning.

They spoke about Hillary Clinton's mindless parroting about issues she ain't got a clue about.  I've  written about this previously

They tell politicians to avoid the cure word and listen to what neurodiversity has to say.  They claim that many autistic people are offended by this word.  But Donvan and Zucker don't seem to care, that neurodiversity is in reality a vocal minority who silence the voices of the true majority of those on the spectrum who can't speak for themselves or write a blog post refuting ND nonsense.  I remain an outspoken opponent of the neurodiversity movement.  There is no reason at all to listen to anything these people have to say and I hope they won't.  I don't believe that a small constituency should be listened to because it's the most expedient thing to do.   

Though I believe it's okay for politicians to say the cure word and say we should work for a cure, that they should use it sparingly.  A cure is not on the horizon in the foreseeable future.  Just as Clinton promised pie-in-the-sky in her policy directives that she has no understanding of, politicians should not promise an easy cure either.  I remember about eleven years ago, I was at an unlocking autism conference and a congressman said we'd work for a cure for autism and find it in our lifetime.  This was not much better or as bad as what Clinton did.  So politicians should not make easy promises on the things i'd like to have happen either.

While politicians may listen to neurodiversity because of the Ne'eman's family power and influence and the bullies who take of advantage of autistic people and their families who may not be functional enough or have the time or resources to refute them, I don't think any rational politician would use the word 'celebrate' to describe autism either.  So i'm not sure why Donvan and Zucker would admonish politicians not to use this term.

I agree that the vaccine argument has likely been refuted. Not so long ago, I suspect a majority of parents whose children had been diagnosed with autism believed it was due to vaccines.  That number is probably smaller now, but it's likely as sizable number as those who believe in the neurodiversity movement and no more on the fringe.  So I'm disappointed that Donvan and Zucker would tell people to listen to the neurodiversity movement and not listen to those who believe vaccines cause autism. Though I don't agree with the vaccine causes autism people, I believe at least they have good intentions and want to help their kids, unlike the hate mongers and mentally ill people who believe in neurodiversity.

Donald Trump has been a proponent of the idea of an autism epidemic and the possibility that vaccines cause autism.  One individual I know who believes vaccines cause autism has stated they planned to vote for Trump because they felt he was the only candidate who would adequately address the vaccine question.  Trump's position on an autism epidemic and the possibility of vaccines causing autism has certainly not hurt his poll numbers and the number of delegates he's received for the republican convention so far, so I don't think that Donvan and Zucker are correct about that. 

As far as seeking common ground and discord in the autism community over political disputes, that is inevitable.  I have no common ground with these individuals in the neurodiversity movement who have bullied me, insulted my mom, libeled me on the internet, and believe I should live my life as a cripple, even though most of them are higher functioning and less impaired than I am (and that's something considering I'm most likely on the milder end of the functioning level)  Donvan and Zucker are dreaming if rifts within the community are going to just go away.

The only point on which I partially agree (aside from politicians using the word cure sparingly and not making pie-in-the-sky promises) is we should not forget about autistic adults.  However, claiming there are easy solutions for housing and other programs when the country is in debt and tax dollars for resources is scarce is not realistic.  Claiming that there is some easy way that an autistic person can be trained for a job and not have workplace programs is indeed a grandiose promise.

Of course, one solution for helping provide services for autistic children would be to amend the CARES act, so the ADDM would be done away with.  This program costs millions of dollars which could go to services for people rather than generating meaningless prevalence numbers that don't accomplish anything.

 Not surprisingly, Donvan and Zucker also fail to discuss the issues of autistics being denied disability who can't work and the monthly disability checks not being enough for a church mouse to live on let alone a human being.

Unlike Donvan and Zucker, I hope politicians who don't have a clue about autism will STFU to be blunt.   There is no reason for Hillary or anyone else to listen to anything ASAN or any other neurodiversity organizations have to say.  There is no reason for her or any other politician to mindlessly parrot talking points they have no clue about.

In  probably every election since John Adams and Thomas Jefferson were running for president, there's been too much pandering to the populace to obtain votes rather than advocating for the right thing, not just in autism, but in all public policy issues.  I don't believe it's productive for these two authors to encourage this practice.  Up until now, I was an enthusiastic fan of Donvan and Zucker, but their most recent Washington Post article is disappointing indeed. 

Thursday, January 21, 2016

Ari Ne'eman's hyperbolic take of In a different Key

The hot new autism book that has recently come out is In a Different Key by Caren Zucker  and John Donvan.  It has some similarities to Steve Silberman's neurotribes in that they both give a lengthy description of the history of autism.  Where they differ is that the latter portrays the neurodiversity in a sympathetic light, while the former treats it with some disdain.

About ten pages of this nearly 600 page tome are devoted to Ari Ne'eman.  Ne'eman published a piece trying to refute what the authors have to say about him and the ND movement.

He starts off his diatribe by playing the murder card, one of neurodiversity's dirtiest tricks, claiming that Donvan and Zuckerberg on page 142 of their book tried to justify the murder of an autistic boy.  They never justified his murder, only stating what the man's defense attorney gave as the rationale that he had killed the boy to put him out of his misery, followed by a distorted logic while profoundly depressed.  His lawyer argued for a temporary insanity defense.  The jury didn't buy it and he was convicted and sentenced to life in prison.  The authors then go on to quote a woman who wrote an article where she only said that the father was not acting out of selfishness as she believed the prosecuting attorney had implied, but had snapped, though she realized this murder could never be justified.  At no time do the authors defend the murder.  Of course, anyone interested can go to page 142 of the book and judge for themselves.

Ne'eman writes how parents can never understand autism first hand because they don't experience what their kids do.  I'm very curious how Ne'eman has experienced autism, how it has debilitated him in any way.  I realize he's stated that he's attended special education at various times for unclear reasons.  That he was bullied for being different and would scratch his face out of frustration til it bled.  He's also stated that he has a sensitivity to velvet textures, has a face recognition deficit, and in a recent blog post commented on a sensitivity to static from a microphone.  Other than that, I have no idea how his autism spectrum disorder has disabled him in any way or how he can claim to relate to the experiences of having autism that I, Roger Kulp, and others have who are truly debilitated by their condition.  He seems evasive when he's asked about this by reporters as Donvan and Zucker correctly stated in their book.  

Next Ne'eman writes:    And far from being about blaming parents, the neurodiversity movement is about shifting the conversation to the real needs of autistic people — to the benefit of parents and autistic children and adults alike.

In fact, neurodiversity has always been about blaming the parents, going back to Jim Sinclair's Don't Mourn for Us speech where he castigates parents for wishing that they did not have an autistic child.  Not to mention Marc Rosen's calling my mother overbearing.  Some of the nastiest members of ND have stated that the reason for my autistic disability is that I had a mother who taught me to hate myself and calling her a witch and a yapping shrew.  Not to mention one individual's statement in the comments section of the Newsweek profile about me that one of the greatest threats to the autism community was my mother.  As far as I know, all of these individuals are members in good standing at ASAN and their membership dues helped pay Ne'eman's $71,000 annual salary in 2013.

Ne'eman also disputes Zucker and Donvan's statement that neurodiversity argues that autism is not essentially a disability, though this is something he's repeatedly stated over the years.

In an NPR interview in 2008, Ne'eman stated:  We're disabled by society, What disables us is, for instance, an education system that's only designed to meet the needs of one kind of student, or societal prejudices which say that autistic people will never be able to live in a community.

Though Ne'eman does not explicitly state here that autism is not a disability, most people would take this statement to believe that he's saying autism is not essentially a disability, because Ne'eman implies that with acceptance and the proper accommodations autism would cease to be a disabling condition.

As older time readers of Gadfly remember, Ne'eman's words from several years ago, which I published after he denied on Lisa Jo Rudy's blog that he'd ever said autism wasn't a disability:

 We see the world in a different way than our neurotypical peers (neurotypical is a word in the autistic community meaning those of the majority neurology). This does not imply a defect, but merely a difference — one that we have just the same right to as those of a different race, nationality or religion.The belief was that anyone society labeled "disabled" could only go so far. Sadly, these misconceptions had the potential to become self-fulfilling prophecies. When the expectation is that people of a certain type can only reach so far, they are not provided with the same challenges and opportunities that educators give mainstreamed students....
In the last paragraph Ne'eman writes:

We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not disability and someday, I hope, the world will recognize that those who think in different ways should be welcomed.

A reasonable person reading these words would seem to get the idea that Ne'eman is stating that autism essentially  is not a disability.

We can also go back further in time to a statement Ne'eman wrote some years ago about whether or not Asperger's (which he's been diagnosed with rather than autism per se) is a disability:

 I happened to stumble upon your entry on a Yahoo Search for Asperger's and I'm glad I did. As a teen with Asperger's, I strongly suggest you tell your son as soon as possible. The fact is he is different. What's more, this is not a bad thing. Any individual who accomplishes anything is different. It's his right and his requirement to know who he is, and what makes him different from those around him. Furthermore,Asperger's Syndrome is hardly what one would think of as a disability. I recommend you take a look at Norm Ledgin's "Diagnosing Jefferson", a wonderful book that suggests that one of the founders of our nation had Asperger's. As I and the book can attest, it is not in spite of but because of the characteristics that set us apart from others that "Aspies", as the popular nickname goes, have the ability to do great things.

The day will come when Asperger's will be recognized for what it truly is: a difference, not a disability, and in many ways an advantage. I think you owe it to your son to talk to him about who he is and help him succeed as that person, not pretend (or worse yet, force him to pretend) to be someone else. I'm somewhat notably successful for my age and as a result I've occasionally been asked to speak to newly diagnosed "Aspies" and at a few conferences about Asperger's and special education in general. One of the things I've always tried to stress is the vital importance of recognizing the advantages of difference and not falling into the trap so many do that different is defective.


I haven't bothered to provide the links, but I think the one to the last statement about Asperger's is still there and can be found in the blog post where I first posted this.  ASAN deleted the article on their web page in which the difference is not disability statement appeared at the time I first blogged about it and the senate was still considering Ne'eman's appointment to the national council on disabilities.

Based on these statements, I would certainly concur with Donvan and Zucker that Ne'eman has stated that autism is not essentially a disability and this has been his belief all along.

Are autistic behaviors considered by some to be pathologic adaptive in nature?  Ne'eman writes:

Many unusual autistic behaviors are important and adaptive in nature. Hand flapping, rocking, and other forms of stimming serve as important means of emotional and sensory regulation for autistic 

children. 

These behaviors cause attention to be drawn to the individual resulting in bullying and discrimination in employment.  While I agree that the bullying and discrimination should not exist, we still have to conform to society, so in that sense the behaviors are maladaptive.  My twiddling (self stim) has made my life miserable.  It prevents me from getting things done during the day and is incapacitating.  It is due to a serious organic brain impairment and I wish something could be done about it.

I don't know anything about the run-in that Ne'eman had with Peter and Elizabeth Bell except for what I read in In a Different Key and what Ne'eman wrote about it in this article.  However, I only hold Pete Bell in disdain for advocating for funding of Alex Plank's and Cubby Robison's Autism Talk TV when he was an executive at autism speaks, even though his son will likely never function at the level of Ne'eman, Plank, or Robison junior.  If the Bells are still unhappy with the neurodiversity movement, I see them as part of the problem rather than the solution. 

As the neurodiversity movement becomes more prominent, I do see them as a threat toward advancement in the science and research that could lead to a greater understanding and treatments that could help mitigate if not cure autism at some future date.  I've now read Donvan's and Zucker's book and I'm glad they question the neurodiversity movement and I hope more in the media will continue to do so, since not too many people read my piddling Gadfly blog where I've been trying to take them on for years.

Thursday, January 7, 2016

Will Hillary Clinton's autism policy proposals fly?

A couple of days ago, the democratic party's leading contender, Hillary Clinton, announced a sweeping range of policy recommendations for autism spectrum disorders she says she'll attempt to implement if she's elected to the white house.  She apparently had a conference call with Ari Ne'eman and a variety of other people.  Interestingly enough, many of these recommendations reflect issues that Ne'eman's organization, ASAN, has tried to implement.  I'd like to touch upon some of them.

She recommends a study to assess autism prevalence in adults similar to what the CDC does for eight-year-old children every two years under the Autism and developmentally disabilities monitoring network which was passed when the CARES act was still the combating autism act.  The ADDM spends millions of dollars a year to produce these prevalence findings.  They track areas, just in specified areas of the country and not the entire country.  Why these specific areas are chosen is unclear.  Every two years they track different counties and cities within the same state and often change the geographical areas, so the prevalence figures have little value.  Also, it is unclear to Gadfly how the CDC prevalence monitoring helps any autistic children achieve better educational goals or occupational goals when they become adults.  How are all these people served by the millions that is spent on these prevalence studies?  The cost is particularly sensitive in that the majority of autistic can't work, can't get on disability and are either supported by their parents or live in abject poverty.   

The CDC searches special education schools and clinics where eight-year-old children are likely to present.  They won't have this luxury in adults which makes studying the adult prevalence so much more difficult.  Contrary to what the age of autism people and others who believe there's an autism epidemic that just happened in recent years in younger persons, this is the likely reason similar prevalence numbers haven't been found in older people.  Or perhaps she wants to do something like the Brugha study whose methodology was highly questionable.  It was based on a modified version of Baron-Cohen's autism quotient survey which turned out to be a poor screen for autism.  They then found only 19 people and on that made an "educated guess" that 1% of the entire adult British population had an autism spectrum disorder.  Not to mention the fact that this screening tool is only designed for higher functioning autistics and not ones who are nonverbal or have an intellectual disability.  Finding adult autism prevalence in adults is really like looking for a needle in a haystack.  I don't believe it is money well spent when many autistics live in poverty and there's a shortage of funding for general services that help parents care for their autistic children.

Hillary Clinton wants to help find jobs for autistic people vis a vis legislation such as the American Disabilities Act and transition plans and the demonstration programs for which legislation has already been introduced by some members of congress.  However, she neglects to mention how autistic people who are disabled by their condition would be amenable to be trained for various occupations to make them more employable.  Even if taxpayer or private money were available, how could it be implemented.  Most autistic people would have difficulty with schooling or learning a trade due to their disability.  Of course, Clinton takes a card out of Laurent Mottron's bag of tricks, claiming they have all these talents and abilities that will make them marketable to employers while neglecting to cite any references or proof.

The Americans with Disabilities act only requires employers to give Reasonable accommodations to disabled employees.  Tolerating tantruming, meltdowns and disruptive behavior that would occur at a job by a variety of autistic people are not reasonable accommodations.   in one case a medical resident stating that acceptance and understanding of his asperger's was a reasonable accommodation did not prevail in federal court.  As was  the case of a man with an ASD whose request for acceptance of his loud voice and asking customers personal questions. 

Hillary Clinton also wants to legislate bullying out of existence.  That's never going to happen.  There are always going to be kids who bully other kids.  It's a shame, but there's no easy and simplistic way you're going to be able to stop it.  Of course, I agree that rather than the autistic child being segregated from their peers because of bullying, that the bullies should be segregated and sent to a reform school where they're locked up for their misdeeds.  Of course, there's no more chance of that ever happening as there is of a cure for autism being found in my lifetime.  Of course Mrs. Clinton takes advice from ASAN, so I suppose she doesn't want to do anything about Clay Adams, Phil Gluyas, Marc Rosen, and other neurodiversity proponents who bully and harass and libel me over the internet.  How dare she listen to any suggestions from Ari Ne'eman who accepted membership dues and donations from these people who helped pay his $71,000 salary in 2013.  

Much to neurodiversity's chagrin, one of the things that Mrs. Clinton did recommend was continuing projects like Autism Speaks Mssng campaign to search for genes that might figure in the etiology of autism. 

However, she fails to give policy recommendations on many fronts.  What of autistic people who can't find mates?  What does Mrs. Clinton plan to do about that?  What about the fact that the vast majority of autistics who have a seriously compromised ability to work are denied disability.  If they get it at all, they have a protracted court battle that goes on for years.  Why won't she mention this? 

Worst of all, she neglected to mention one word about autism prevention or ultimately finding a cure for autism.  It would seem Mrs. Clinton is another politician who unfortunately has been influenced by neurodiversity advocates. 

Autism is not a political or legislative problem.  It is a developmental disability.  We need scientific funding and not politics to help solve the problems of autism. 

Will Mrs. Clinton's policy recommendations fly?  Gadfly doesn't think so.