Sunday, December 11, 2016

ASAN's latest 990: A precarious financial situation?

Recently the premier neurodiversity organization The Autistic Self Advocacy Network, a 501(c) charitable organization, made public their latest (2015) 990 form.  Again, Ari Ne'eman increased his annual salary to nearly $90,000 a year in 2015 as can be seen by this page from the form below:

This is an approximately 6% pay raise from his 2014 salary which for Mr. Ne'eman is far more modest than his other increases.  In 2012 he increased his 2011 salary from $40,000 to $65,000, a 62% increase.  One of ASAN's numerous talking points has been the criticism of the high salaries that executives from autism speaks receive.  However, in 2012, Ne'eman's $71,000 salary was approximately twenty times higher than Autism Speaks' chief executive officer's $400,000 salary in ratio.

It would seem that the Autistic Self Advocacy Network was more fiscally responsible in 2015 than in previous years. However, looking at their tax form gives a clearer picture:

We see that while Ne'eman's salary had a slight increase, his organization's revenues had an approximately $150,000 dollar decrease from 2014's from about $765,000 to just under $618,000. In addition to Ne'eman, they apparently have other salaried employees and increased their employee compensation from about $270,000 in 2014 to about $365,000, a nearly $100,000 increase while their revenue dropped by $150,000.  Their form also shows that in 2015 they spent nearly $78,000 more than they took in in revenue.

I admit that I'm not an accountant or any kind of tax expert.  Perhaps there's something in the forms that I'm not reading correctly.  However, it would seem from a perusal of their statement that if this trend keeps up over a period of years this organization could become bankrupt at some point.  Though they still are in the black as far as their total assets are concerned.

Ari Ne'eman has announced that he will step down as president of ASAN and still serve on the board while his colleague Julia Bascom will take over as president of ASAN.  The timing of this may have been a coincidence, however, Gadfly has speculated that Ne'eman was counting on an appointment to a high fallutin' disabilities post in a Hillary Clinton administration.  In response to Donald Trump, Ne'eman has stated, "I don't work with fascists."  This means that if he keeps his promise, he would decline the same post in Donald Trump's new administration when they start January 20.  It should also mean that Samantha Crane or whoever else holds ASAN's seat on the Interagency Autism Coordinating Committee should resign as soon as Trump is Inaugurated.  Somehow I don't think that's going to happen.

Perhaps there's another reason for his stepping down as president.  Maybe he didn't want to be in charge of a sinking ship. 

Tuesday, November 8, 2016

One last thought on the election madness

The election is today and I've already cast my vote.  I wanted to make a blog post before it ends tomorrow.

Donald Trump believes that autism is caused by vaccines.  I think he may also believe in a government conspiracy.  He also mocked a disabled reporter which means he mocked me and all other disabled people.

Hillary Clinton listens to neurodiversity and makes pie in the sky promises she can't possibly keep.  Like getting autistics jobs through the ADA and legislating bullying out of existence.  She also wants to do an adult prevalence study which I feel is a waste of taxpayer money.  In fact I think the whole ADDM that the CDC does due to the CARES act (combating autism act before) is a waste of taxpayer money.  I wrote about Clinton's baloney in a previous post.

Ari Ne'eman is resigning his presidency of ASAN effective next month and Julia Bascom is taking his place.  He'll still be on the board of directors and may still accept his high salary and continue to raise it.  I suspect he may be appointed to be an "autism czar" in the Clinton administration. 

Whoever is the president elect tomorrow, it's going to be a sad day as far as U.S. autism policy is concerned, at least for me.

Thursday, October 27, 2016

male/female sex ratios and neurodiversity revisited

One of the hot topics in autism lately has been skepticism over the reported ratio of autism in males versus females.  Ever since autism was first described,  an approximately 4:1 male:female ratio has been reported.  This started with Kanner’s initial paper with eight boys and three girls and Asperger’s first paper which had four boys and no girls.
 The four to one ratio is actually an average of various findings in studies and prevalence reports, varying from about 1.72 to 1 to greater than 15 to 1.  These averaged to about 4:1.  These rates were different in more severe cases than milder cases.  At the lower end, the ratio is usually about 2:1 or less, in the higher functioning cases it is about nine to one or more. 

     This has lead some to question the legitimacy of the very high ratio in the cases at the higher end of the spectrum.  Among certain clinicians and autism authorities there is the argument that autism presents differently in females than in males.  That females don’t act out the way males do.  That if a female has behavioral problems because of societal expectations, they will just think she’s a “drama queen” rather than believing she could have a neurologic disability.  Girls are also better at masking their symptoms than boys.  There are more pressures for them to socialize properly.  In certain instances, their autism manifests itself in a different manner, rather than engaging in certain behavioral issues, such as “stimming”, they will internalize their autism with anxiety and depression.  If they present to a clinician, they may be diagnosed as something else, or the clinician will not note any of the signs of autism.  Boy’s have more abnormal obsessions such as electricity wires, weather, and other things.  But if a girl is obsessed with a certain rock star or band, this does not seem to be irrational, unless, of course, the diagnostician digs deeper and finds that the girl was actually not interested in going to the band’s concerts or listening to their music.  A girl may copy how neurotypical girls dress, act, or talk, in order to fit in.  This could mean that while a girl with an intellectual disability might be more apt to receive a diagnosis, a girl with very mild autism could be overlooked as opposed to an autistic male.   

     Some individuals have suggested that a study done by Dworzynski and colleagues provides empirical evidence for this.  They published a study comparing boys and girls who had high autistic traits, some of whom didn’t merit an autism diagnosis while others did.  They found among this high trait group that more boys received a diagnosis than girls (56% versus 38%).  The diagnosed girls had more pronounced behavioral issues than the diagnosed boys, i.e. more hyperactivity, social problems, anxiety and acting out as well as lower average IQs.  The girls who had autistic traits, but were not considered impaired enough to merit a diagnosis had greater communication difficulties but less social impairments compared to the non-diagnosed traited boys.  This suggests the possibility that the higher level in social abilities among some girls may cause them to be missed by a clinician who may have probed deeper and diagnosed them.  One of the problems with this study was the instrument used to assess the autistic traits the CAST (Childhood Autism Spectrum Test, originally Childhood Asperger Spectrum Test) has been found to have limited predictive value, having a predictive value of about 50% against clinicians consensus diagnosis.  

     In another study, researcher Ginny Russell found that boys were more likely to be diagnosed than girls even when severity of symptoms was held constant, suggesting that there may be bias among clinicians that prevent girls from being diagnosed. 

     One of the problems with this line of thinking is that similar ratios have been reported in other developmental disorders.  Attention deficit hyperactivity disorder, dyslexia, intellectual disabilities, and stuttering are among those.  The social problems of autism do not exist in these conditions and it would be a lot harder to hide them; a dyslexic either has difficulty reading or doesn’t, a stutterer either talks fluently or doesn’t. 

     However, though it’s possible that clinicians have missed some cases due to bias, there’s also an alternative explanation that females may have some sort of protective effect against autism.  These may be hormonal, i.e. estrogen and a lack of testosterone in females and vice-versa with males.         

     Females also have two X chromosomes and males only have one.  There are a variety of forms of autism which are X linked such as fragile X.  The female’s spare copy of the X chromosome may protect her from this effect, but she still might be able to pass it on to her son.  This could in part account for the higher ratio of autistic men to autistic women.  However, the number of X linked cases which usually result in intellectual disability would probably be too limited to account for all of the varieties of autism that would account for the higher ratio in men.

     It is also possible that differences in the way male and female brains are structured may give them some sort of protection against autism.  Because of this females may need to have a higher level of genetic mutations than males in order to acquire autism. 

     Elise Robinson of Harvard university has given indirect evidence of this in one study.  She compared a group of opposite sexed fraternal twins with autistic traits and found that when comparing boys and girls who were ranked in the top 10th percentile in these traits, the girls were more likely to have an autistic sibling than the boys.  This provides indirect evidence that a greater amount of genetic loading may be required in girls to become autistic than in boys. 

     There were other researchers who failed to replicate Robinson’s findings.  Robinson used a very large sample of twins from two national databases.  It’s possible that the differences in sample size was the reason for lack of replication. 

     Robinson’s work only gives indirect evidence of a greater genetic load in females being necessary to become autistic.  Work done by Sebastien Jacquemont and others gives more direct evidence.  They found three times as many deleterious mutations in female autistics as in males.  This was also the case when they controlled for cognitive abilities of the sexes, suggesting that this was not because of females more severely affected.  They also found higher levels of these mutations in the mothers of the children than the fathers.  This data suggests that females have some sort of protective effect, making them less vulnerable to autism. 

     Donna Werling and colleagues did a study in which they compared gene expression in male and female brains.  Also in autistic post-mortem tissue versus controls matched for age.  They found that the genes expressed more commonly in the male brains were also expressed more commonly that in autistic versus the non-autistics.  They also studied the brains to see if genes associated with autism were differently distributed in male and female brains.  They found this not to be the case.  However, they found that genes that are indirectly associated with autism are expressed differently in the male brain versus the female brain, suggesting that females require a higher genetic load in order to get autism.

     There are multiple other studies that have provided evidence of some sort of female protective effect, suggesting that even if some female cases are missed it would not profoundly affect the differential sex ratio. 

     Neurodiversity proponents have often spoken for people on the spectrum, saying ‘we don’t want to be cured’ or we don’t want this or we don’t want that, a phenomenon blogger Harold Doherty refers to as ‘the royal we’.

     If those who advocate the neurodiversity mantra speak for all or most autistics, such as Alex Plank claiming that most autistics don’t want to be cured, we should assume that these individuals are very similar to a representative person with autism. 

     They are not similar, however.  One of the most striking dissimilarities is that so many of them are females.  Upon a sampling of the internet and autism conferences, it would seem there are far more many females than males.  Even if the ability to assess autism in women improved and this came up with a 2:1 ratio of men to women, it would not come close to the neurodiversity sampling.  There are probably at least a greater than 2:1 ratio of neurodiversity females to males.  These are also the most high functioning cases with many of their numbers being college professors and lawyers. 

     One has to wonder why so many of them didn’t slip through the cracks.  If autism is more difficult to assess in women because it is more subtle, then how did so many extremely mild cases come to the fore?  One possibility is multiple doctor shopping   Another is self-diagnosis.  As seen from a previous post, it would appear that the autistic self advocacy network may encourage self-diagnosis through their statements such as “who identifies” on the autism spectrum.

     This has been problematic as neurodiversity has been very effective in getting their message across and claiming that they represent the interests of the majority of autistic people.  This is in spite of the fact that gender-wise and functioning-wise they are so dissimilar. 

     One of the main problems with this is that they would encourage accommodations and services over scientific research.  Perhaps there is a reason that the skewed sex ratio in autism has been studied so much and genetic studies trying to show a protective effect have been so common.  Though there is fairly strong empirical (though maybe not conclusive) evidence to suggest that females have some sort of protective effect from autism, the reason for this female over male advantage in not getting autism has not been found.  If it could be found, the implications could be astonishing.  If we could find out what causes this protective effect, it could lead to prevention and treatment.  If there was some way the protective effect could be exploited in a male fetus, it could well prevent him from becoming autistic.  It might also lead to a possible causation and *gasp* even a cure.  This is so ironic that people so unrepresentative of autistic people can attempt to speak for most on the spectrum when research based on the skewed ratio could at some point in time make a real difference.   

      Katharina Dworzynski et al How Different Are Girls and Boys Above
and Below the Diagnostic Threshold for Autism Spectrum Disorders? Journal of the American Academy of Child and Adolescent Psychiatry Volume 51, Issue 8, August 2012, Pages 788–797

      Werling et al  Gene expression in human brain implicates sexually dimorphic pathways in autism spectrum disorders. Nat. Commun. 7, 10717 (2016)

     Jacquemont et al  A Higher mutational Burden in Females Supports a "female protective model" in neurodevelopmental disorders The American Journal of Human Genetics 415-426

     Robinson et al. Examining and interpreting the female protective effect against autistic behavior  Proceedings of the national academy of science March 26, 2013 vol 110 no 13


Tuesday, October 11, 2016

Autism Speaks' October Surprise: They no longer want a cure?

Autism speaks has published a new mission statement:

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

Saliently absent is the word "cure" from their mission statement which they had in the past:

 We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism;

Anti-cure Autism Speaks board member Stephen Shore announced this today on his FB page, linking to autism speaks' website showing their new statement and is apparently pleased that he (and others with influence) got their way.

In the days before Autism Speaks, I was a supporter of Cure Autism Now and participated in some of their walks and donated money to them in the days when I was working and had a bit more extra money.  In 2005, the National Alliance for Autism Research and Cure Autism Now merged to form Autism Speaks.  In the early days of Autism Speaks, I signed paperwork donating my brain to their Autism tissue program, not knowing what their organization would eventually become.

In 2008, they donated a nearly half a million dollar grant to Laurent Mottron who not only believes that the notion of curing autism is nonsensical  but also believes that autism is not a disorder or a deficit or that there is anything wrong with the brains of those on the autism spectrum, but that autism is merely a "difference"  Some years ago I wrote a blog post inquiring why autism speaks would donate this kind of money to a man whose goals and statements were so diametrically opposed to their own and what they advertised to solicit donations on their walks and other places.  Laurent Mottron also had autistic autism researcher Michelle Dawson on his team who stated that Autism Speaks was out to deliberately harm autistic people in a post in which she stated that AS ideally wished a short future for those on the spectrum and linked to a piece that Suzanne Wright had written stating that she wanted to eradicate autism.

For years, autism speaks had received criticism from various so-called autism advocates for not having any autistic people on their board of directors or in positions of power.  Many individuals, including Steve Silberman many years later, made the hyperbolic comparison of  the NAACP being run by whites and not allowing any black people to make managerial decisions in the organization.

Autism Speaks, not being immune to its many detractors, actively tried to recruit various high profile individuals at the very mildest end of the spectrum.  This included Stephen Shore, a very high profile autistic and prolific conference presenter with a doctorate in special education who worked with various children on the spectrum.  Steve Shore was opposed to a cure and the notion of autism being a disordered rather than different way of being, but this did not matter to AS.  They tried to recruit him for either board of directors or some other position.  He turned them down, believing their goals in autism were incompatible with his.

John Robison, who wrote a commercially successful memoir about having Asperger's syndrome, was also approached and asked to serve on their scientific advisory board, along with parents and scientists who all had doctorate degrees, despite that the fact that he was a high school dropout with no knowledge of autism science.

Not long after John Robison started serving on the board, they funded the production of short autism related videos, called Autism Talk TV.  The recipients were both Alex Plank and Robison's own son, Jack "Cubby" Robison.  Alex Plank runs the pro-neurodiversity website Wrong Planet.  He's not only stated that most autistics are opposed to a cure, but in the past stated that autism is a good thing.

After these events, I was appalled at Autism Speaks and regretted having donated my brain to them, though to this day I still haven't bothered to revoke my donation.  I no longer supported them in any way and would not donate money to them, even if I had more money to donate to a good autism charity.

After the Los Angeles Times published an op-ed piece by Steve Silberman that included the analogy between autism speaks and the NAACP that I wrote about above, Liz Feld, Autism Speaks CEO, responded urging the autism community to work together.  This was years after not responding to repeated criticism by the neurodiversity movement, including that they were eugenicists whose only goal was to find a pre-natal test for autism and urge the abortion of autistic fetuses.

Another significant event took place.  Suzanne Wright contracted pancreatic cancer.  This was so difficult for their family, that the Wright's resigned from the autism speaks board and others took over.  This made Steve Shore believe that autism speaks was now a safe haven and after some years of unsuccessfully trying to recruit him for their board of directors, he finally decided to get on board and become a team player.  Valerie Paradiz who has stated that she has Asperger's was the second autistic board member to be appointed by Autism Speaks.  Valerie has not only been an opponent for a cure for autism, she stated at least according to one media source  that autism is not a disability but a strength.

But now autism speaks has reached a new low in no longer stating that they want to cure autism.  

I don't know exactly what this means and whether or not they will continue to fund genetic research and neuroscientific research as they did in the past.  They say "better interventions", but I don't know if this means more ABA type things or if it is something like medications, or various types of neuromodulations such as Manuel Casanova's TMS or something like Yuri Danilov's experiments with stimulating the brain.

I realize that a cure will not likely be found in my lifetime.  There is the argument that just because they don't use the word cure does not mean that they won't fund interventions that might help people. and that they won't fund the same scientific research before that could lead to an improvement in the quality of the lives of autistics or even a cure.  They don't have to talk about a cure because it is not something that will happen, at least in the short term.

However, this is a victory for neurodiversity who are in a much better position to speak for themselves than those of us on the more severe end of the spectrum who cannot get married or be college professors unlike Steve Shore and Valerie Paradiz.

Roger Kulp is an individual with more severe autism than these people.  He's very knowledgeable about the science of autism and the few forms of autism such as cerebral folate deficiency that are actually amenable to treatment.  He's expressed a desire to be on the board of directors, but Autism Speaks does not want him on their board.  

Regardless of whether or not a cure is or isn't realistic, that should still be the ultimate goal of any decent autism organization.  They should state that at some point of time they want to end this tragedy and not have to exist anymore.

It's a shame that autism speaks has gone in this direction and was influenced by a few people whose autism spectrum is so mild that it does not matter to them if many of us who do want a cure for ourselves or family members who are suffering.

If anyone reads this post who gives money to autism speaks or has participated in their walks, etc., I urge you to boycott them until they make a public statement stating that they want a cure and put their goal of finding a cure in their mission statement.

Of course there is still the Simons Foundation, funded by multibillionaire James Simons.  They don't have to worry about marketing and promotion to get funding in contrast to Autism speaks.  They fund a lot of the genetic research that neurodiversity detests so much and are likely more immune to political considerations than autism speaks.  If autism speaks funded research can't or won't find a cure, then I hope the Simons foundation's will.

Addendum:  I've just been alerted to the fact by one of my commenters that autism speaks has also omitted the word "prevention" from their mission statement also.  It's possible that this could mean that if for example CRISPR techniques advance to the point where genetic editing could be done so that a person won't develop autism, AS is against that too.  They've bought the phony baloney neurodiversity argument that prevention is a code word for abortion. 

Wednesday, August 31, 2016

Has Autism Given Me The Gift of Prophecy

Some persons on the autism spectrum have extraordinary talents and abilities.  These are known as savant skills.  Rainman's ability to count through an eight deck shoe in blackjack became well-known after the movie of the same name came out.  One individual I went to special ed with could tell you what day of the week any date of the year was.  More amazingly, he could tell you exactly what he'd done that day.  Jerry Newport's ability to multiply four digit sums in his head were also well known and helped land a movie based on his life's story, Mozart and the Whale.  Stephen Wiltshire's drawing ability is also well known.  Others have extraordinary musical abilities.

Bernard Rimland conducted a survey and estimated that ten percent of spectrumites have savant skills.  Researcher Patricia Howlin thought that his estimate was far too conservative and claimed that it was possible that as many as thirty percent of autistic people have some sort of savant skill.  Darold Treffert, an expert on savantism, stated that her figure was probably based on a liberal definition of what defines a savant.

Until recently, I felt left out that I was in the ninety percent of autistic individuals (or seventy percent if you take stock in Howlin's more liberal estimate) who have no special talents or savant abilities.  In one week from today I will be sixty-one years old and amazingly enough it took me that long to realize that I actually have a savant skill-the gift of prophecy.

Let me elaborate.  The small number of you who have actually followed my blog know that autism has handicapped me in two ways.  It has seriously compromised my ability to make a living.  I'm likely in the Guiness Book of World Records for most jobs fired from.  I have not worked in nearly ten years.  I have also never had a girlfriend and my intensity and relentless negativity has been a turnoff to them.  Some of you may also recall my quote of Freud's stating that to work and to love are cornerstones of our humanity.  Ergo, I have felt autism stripped me of my humanity.  I've discovered that when this issue comes up I can predict what people will advise me to do about these problems and their general comments on these issues.  I can also predict what a neurodiversity proponent will say is the reason I hate my autism so much. This must mean I have the gift of prophecy.

Multiple people have advised me to disclose my disability to prospective employers.  This will solve my problems of being fired.  They will say to themselves "that explains it" if I make a funny movement with my hand instead of being prejudiced against me.  If I make too many careless errors, they will say "that's all right his autism explains it" or they will make a better effort to work with me.  Or that the Americans with Disabilities Act gives me the right to ask for accommodations and the employer will grant me these accommodations, they'll work and problem solved.  Ari Ne'eman has even gone so far to state that all social unpleasentries that autistic people commit in the workplace should be completely overlooked.  I get fed up with explaining to them that if there is something the employer does not like about me, they are going to fire me and they won't overlook errors and knowing I have an autism diagnosis won't matter.  Also that the Americans with Disabilities Act only gives me the right to ask for reasonable accommodations and being able to go more slowly or asking to put up with loudness and behavior they don't like aren't reasonable accommodations under the law.

As far as not having a girlfriend is concerned I should find someone "like myself", a polite way of saying I'm not suited for a non-handicapped woman and "mixed marriages" are taboo.  Or some unabashedly state "find an autistic girlfriend".  It does not matter that the ratio of autistic men to autistic women on the milder spectrum is 10 to 1 and at least nine out of ten guys are going to be unlucky.  Actually the number is probably greater than that since "mixed marriages" between a handicapped woman and non-handicapped man aren't as taboo.  Not to mention the fact that the most desirable autistic women will have no trouble finding a non-autistic man and most of them will prefer them to the autistic man (barring extraordinary exceptions like Mike Carley and John Robison of course).

According to many neurodiversity proponents the reason I don't believe my autism is a beautiful thing and I'm not celebrating is that I had a horrible domineering mother who taught me to hate myself.  Because she wanted a "normal" child, I somehow sensed this and when I could not make her happy I ended up hating my autism. She's been called overbearing, domineering, a witch and a shrew by at least some of these people.  It has nothing to do with the fact that it prevents me from living a normal life, being able to make a living or having friends and girlfriends and I have the uncontrollable compulsion to twiddle during the day.  Interestingly enough I actually lived through the Bettelheim era in the sixties where I and my parents had to hear this and castration anxiety was at least in part thought to be the etiology of my disability so it is nothing new for me.      

I only wished that I'd known about this savant skill I have earlier.  I would have been able to predict the weather and earthquakes and save lives.  I would have been able to make a fortune playing the ponies.  I would have been an expert poker player able to predict exactly what cards would fall and know what hands to play.

Perhaps it's not too late, even at my advanced age.  I could work on it and practice and develop this skill or maybe I could get TMS like John Robison did and it would stimulate the right brain areas and then I could actually bring out this latent ability.

Well, in spite of all the hardships that autism has caused me I guess I can take solace in the fact that I have the gift of prophecy. 

Friday, August 5, 2016

Mike Carley's bizarre take and poor taste on the passing of Suzanne Wright

I see that one of my favorite autism writers Michael Carley is at it again 

Carley, an anti-cure member of the neurodiversity movement, is best known for his statements that Autistics universally don't want a cure in his book Autism from the Inside Out, also opposing a cure on an NPR show and then on a subsequent NPR program stated that he didn't want Asperger's eliminated as a DSM diagnosis because if he were called autistic that means he'd be lumped in with "head bangers" and "diaper wearers".  He was one of the leaders of circulating a petition to not have AS removed from the DSM which did not succeed.

Carley is now topping himself in his most recent post on Suzanne Wright's death.  Even posthumously, he seems to want to disparage the woman who cofounded the organization that he hates so much rather than expressing condolences for her untimely demise.  Nowhere does he express sympathy for this woman who died of cancer before reaching her 70th birthday.  Though I've disagreed with Autism speaks on many issues, I still expressed sadness at Ms. Wright's passing.

Carley starts out his piece with braggadocio about how he started GRASP and how large it is and how in 2003 no one would think that autistics would be this capable:

As most of my readers know, I founded GRASP in 2003. GRASP was the world’s largest membership organization for adults on the spectrum.
Back then, even just the thought of such an organization (‘There are adults on the spectrum? They want to be thought of as capable? And they can run their own organizations?”) was taking off…until 2005 when the behemoth called “Autism Speaks” entered the scene.

I have news for Mr. Carley, Jerry Newport, myself, and others started AGUA (Adult Gathering United Autistic) back in 1993, ten years before he started GRASP and probably about seven years before Carley had even heard of autism.  It's still in existence 23 years later.  We were probably the first adults to start an organization like that, though Jim Sinclair's ANI (Autism Network International) may have started around the same time.  (you also missed that Mike, if you happen to read this).  

Carley continues, blaming parents of lower functioning children for internet flame wars:

Now back then, families of significantly-challenged spectrumites somehow felt justified in lashing out at those on the end of the spectrum that were better able to mirror greater society—those of us they bitterly referred to as “higher functioning.

Neurodiversity has a history of almost always being the aggressors in these debates, equating parents they disagreed with as Nazis as Martjin Dekker did, equating them with the KKK as Noah Britton and bloggers Kowalski and Turner did. And suggesting parents don't know what's best or will do things out of convenience rather than love for their children as John Elder Robison has. With the exception of John Best and Lenny Schaefer, no parent of an autistic children has leveled harsh unprovoked rhetoric against those on the other side.  Harold Doherty and autism's jabberwocky MJ refuted neurodiversity, but always with tempered rhetoric.  He just wants to lash out at a few parents who may not have turned the other cheek in internet flame wars that he and other members of ND started.   

Rightly or not, Suzanne believed that her toddler grandson, who also suffered from stomach pain, was crying out for her to go to war for him. So to war she went; never wavering, never 


Carley conveniently forgets the articles of understanding discussion he had with Allison Tepper Singer who at the time worked for autism speaks.  Not to mention he is not omniscient and can't possibly know the intentions of ms. wright or her grandson.  

 On our side of the ideological border, where the voices of acceptance, and education lay, people like Ari Ne’eman and myself were given enormous faith, and respect by our constituencies. But we were not loved anywhere near the way Suzanne was loved

One possible explanation that did not occur to Carley was that though Suzanne Wright often espoused harsh rhetoric to explain what a horrible disability autism was and that neurodiversity found that offensive, she never insulted people far more disabled (assuming Carley's disabled at all) by stating they did not want to be lumped in with headbangers and diaper wearers and stating that people who supported autism speaks were morally complicit with murder as Ne'eman did.

Bob and Suzanne had terrible, perhaps even manipulative, opportunistic advisors when they started Autism Speaks, and that is why they got off on such a terrible foot (though the fact that they made this regretful course irreversible, lies on them).

Yeah, right, that's why Autism Speaks has raised tens of millions of dollars and is the best known private funder of autism research (even if Simons is larger they are less well known) or if Carley means they got off on a terrible foot in that they used harsh rhetoric that neurodiversity did not like, then somehow I don't think that's true. 

Carley then makes personal statements about Ms. Wright's life, about her being a policeman's daughter and making analyses of their stable marriage of decades, since Carley's first marriage did not work out and he was able to have a second whereas most autistics, myself included, will have none. (I won't paste Carley's remarks here)

Autism is not life or death.

Yeah that's why autistic people have a life expectancy 18 years lower on average than nonautistics, though Carley is functional enough so that it probably won't affect his longevity.

Carley makes statements about Ms. Wright's working class socioeconomic background, trying to claim that those qualities made her some sort of gutter fighter and that is the reason that neurodiversity has not done as well as autism speaks or against them as they could had Ms. Wright had been born into wealth.  He encourages neurodiversity proponents to model Ms. Wright's sterling qualities to provoke more flame wars against parents who want to help their autistic children live better lives.   

I believe using someone's death as a demagogic attempt to incite more inflammatory rhetoric from neurodiversity and to bait people into starting more flame wars and fighting parents of autistic children who want a better life for their kids is in extremely poor taste.

Maybe I should not have written this blog post but Carley kind of makes my blood boil. 

Thursday, August 4, 2016

Looking for stories from parents who have been abused online by neurodiversity proponents.

For about the past year, I've been trying to write a nonfiction book about the neurodiversity movement.  I think I have about one half of a first draft now, at about 55,000 words or 200 something pages.  I have enough stories to regale readers about the abuse I've experienced from these bullies and hatemongers for the past fifteen years.  However, I'm interested in hearing from parents of autistic children who have received abuse from these people for possible inclusion in the book.  I'm still plodding along trying to write this in spite of my disability.  It takes me a long time to get things done but I'm trying my best to accomplish something, though it's incredibly hard with this disability.

Well anyhow, if you have an interesting story to tell me, drop me a line at 

Wednesday, June 22, 2016

petition to remove Steve Silberman as ASA keynoter

Some of us don't like Steve Silberman's horrific ideas about autism.  He's going to be the keynote speaker at the ASA conference in a few weeks.

Therefore there's a petition for the ASA to remove him as speaker.

It is wrong for ASA to have a keynoter who states that autism versus a healthy brain is the same as a windows versus a linux operating system, who states that disability is part of the human experience and we all become diaper wearers at some point.  Wrong for him to say autism unemployment is due to human resource offices not willing to work with nonverbal people, wrong for him to rewrite the history of autism, and wrong to say the love Mark Rimland has in the community obviate the need for a cure for his very severe autism.  

I realize this petition has no chance of succeeding and the person who started it did this pretty late in the game (should have been started at least a couple of months ago).

However, I hope those of you who feel as I do will sign this petition so we can let the ASA and the rest of the world know how we feel even if they won't dump him as their keynoter. 

Sunday, June 12, 2016

Autism as an advantage with women and aphrodisiac: autism can land you a hot girlfriend

Autism diagnoses started to soar in the 1990s and those new cases are now adults in their early twenties.  Society and the media have noted the need for employers to hire those on the spectrum.   This has lead to major media outlets such as the Wall Street Journal and the New York Times publishing articles on how autism is an advantage in the workplace and how it can land you a job.  here's.The New York times article extolling that Danish Godsend Specialisterne. here's the Wall Street Journal piece about how easily autism can land you a job.  These articles are intriguing as they make one ponder why in spite of this alleged advantage we have reported unemployment rates for autistics at 80% or higher.

Freud said that love and work are the cornerstones of our humanity.  Finding a significant other more often than not has been a formidable hurdle for many on the spectrum.  One has to wonder why major publications such as the WSJ and the New York times won't address the problems autistics have with that other cornerstone, l'amour.

Since the major media outlets won't write about this issue, I guess it's up to your humble blogger with his piddling little blog hardly anyone wants to read.  So, you're going to hear it right now.  Autism is an asset and an advantage with women and autism can land you a hot girlfriend!

Autistics have great attention to details since they've done so well on the embedded figures tests and have done such a great job in detecting patterns in Simon Baron-Cohen's experiments.  They will notice how nice a woman's dress is and be willing to compliment her on it.  They will notice redeeming physical features of a woman that neurotypical men won't even see and will be able to shower her with compliments that neurotypical men can't.

Though autistics rarely have children it continues increase at huge rates, having a mere prevalence of 1 in 2500 in the 1960s to the rates of 1 in 68 we see today.  The reason for this must be because autism has an evolutionary advantage due to our superior genes.  If women mate with us instead of neurotypical men, we'll be able to give them superior offspring.  Hell, ladies, your child with us might become the next Albert Einstein, Bill Gates, or Thomas Jefferson.  Since the exact genetic transmission of autistic traits is obscure, your children with us may have all of the advantages of autism and none of the disadvantages.

Temple Grandin has stated that at least half of the silicone valley has autism and that we've come up with every invention from the spear to the cellphone.  That means that your potential suitor may be the next billionaire.  He'll be able to ensure you live a life of ease and buy you a villa on the French Riviera.

Autistics also have sensory issues.  This means that the man will be more sensitive and attentive to the woman's needs.  

Autistics are also overly loyal as has been reported in the media.  That along with prejudice against us from women who aren't aware of all of our advantages means there's a much lower (if not zero) probability that we'll commit adultery if you marry us.  Though there have been reports that divorces are higher among parents of autistic children than in the general population, this means your marriage will be more stable and there won't be the problems of divorce that make neurotypical marriages a coin flip chance.  This is aside from the fact that Michael John Carley is divorced and remarried and John Elder Robison has been twice divorced and is now on his third (and hopefully final) marriage.  Of course these are high functioning outliers, so most of us will be stable and there won't likely be a problem of divorce.

Chances are most women won't land a neurotypical billionaire.  One problem with one of these men is that they'd insist the woman sign a prenup if they were to marry them.  Due to the autistic billionaire's poor social judgment problems, they won't know any better than to insist their wife sign a prenup and in the unlikely event the marriage ends in divorce, the money will be community property in most states and the newly single woman will land a few billion smackers after a quickie divorce in Reno.  These social skills aren't deficient, they're merely different and they aren't a disadvantage, they confer an actual advantage on those who are autistic.

Autistic men also have loud voices.  This means that if they're trying to hail a cab in new york city or trying to get the attention of a waiter in a busy restaurant, this will be a huge advantage on dates.  

What about situations in which these different social skills can be a disadvantage.  After all, an autistic person might be more argumentative with their girlfriend and start shouting at them.  They might be embarrassed to take them to a party their neurotypical friends are having as the autistic man may say or do something socially inappropriate.  This shouldn't be a problem.  After all, some might argue that this would adversely affect them in an employment situation and that those who say autism is an asset in employment are mistaken.  Ari Ne'eman offered a solution to this some years ago.  All we have to do to eliminate autistic unemployment is to end social pleasantry as a criteria for hiring employees and evaluating their job performance.  No reason why we can't do this in dating situations also.  No matter how inappropriately the autistic man acts, the woman can just eliminate social pleasantry as a criteria for picking a boyfriend.  If he tells her best friend how much weight she's gained recently, it does not matter.

Now that I've written this article that the New York Times and Wall Street Journal won't write, I'll be waiting for dating services to open up for women seeking suitors, where all the candidates will be autistic men and they'll extol all of these virtues we have.  Maybe we can get the socialistic government of Denmark to provide the start-up money for this endeavor.  Or maybe the current governor of Delaware and their state legislature will provide an $800,000 grant for such an enterprise.  Since they both did this with Specialisterne and Thorkill Sonn it's only fair they do it for dating too. 

Tuesday, May 31, 2016

Again the question of neurodiversity and "human rights"

When I first began writing this blog, I gave a response to an angry rant by one Michelle Dawson claiming that because I was opposed to neurodiversity-the idea that autism is a disorder and not a normal genetic variation or an alternative form of brain wiring-that I'm opposed to the idea of "human rights" for autistic people.

Recently this phony baloney strawman issue has come to the fore again. This was in response to an article written by a young woman on the autism spectrum who writes under the pen name of Gwendolyn Kansen.  This article got a fair amount of traction on twitter and Facebook and recently appeared high in the google news search under "autism".  Because Ms. Kansen's article made somewhat of an impact, some people in ND felt they should attack her.  Though I don't agree with all of Ms. Kansen's article, she does make a few valid points.  She gives a lot of examples of how autism can be extremely disabling and an intrinsic disorder, rather than something that can be accommodated for by society and cease to be disabling.  For this reason, some individual in the neurodiversity movement who refuses to even sign an internet stage name has tried to refute Kansen's point, by repeatedly stating that this only means she opposes "human rights".

I believe that all people (not just autistic people) have the right not to be discriminated against and treated with dignity.  This does not mean that the American's with Disabilities act give those on the autism spectrum the right to behave however they please on a job, despite what Ari Ne'eman has stated about "social architecture" and overlooking social unpleasantries in the workplace.

In the case of McElwee the federal court of appeals ruled that overlooking autism when the individual who behaves badly on the job and makes untoward advances to women is not a reasonable accommodation under the ADA.  Nor can someone just ask for understanding on the job and expect to be accommodated when they are ill-suited for the profession.

In the case of wandering, it is not a violation of an individuals rights to protect them from drowning or being run over by a car as various members of the neurodiversity movement have suggested.  Parents have a right to place their child under a conservatorship if they can't take care of themselves.  It would be a violation of their right to be alive if they were not protected from wandering in spite of Neurodiversity's unsuccessful attempt to eliminate the wandering codes some years ago.

I do agree that children have the right not be shocked at the Judge Rottenberg center though I suppose it's still legal in that state, though illegal in california where I live to do that.  Hopefully the FDA or state legislatures elsewhere will take care of that.

Though I can't argue about the strawman the author repeatedly says of Gwen Kansen (and others myself included) wanting to deliberately violate the rights of autistic people, let's examine some of the points they make.

Because Kansen and others point out that many autistic people have IQ's below 70, she does not mean that they don't have human rights, only that neurodiversity is violating their right, by speaking for them on the subject of a cure or other autism-related issues when they are ill-suited to do so due to having an intellectual disability.  So if anyone is the human rights abusers it's ND.

When Kansen writes about experiences she had with a bad boyfriend, she is not saying she is opposed to human rights, but only that autism has issues that are intrinsic to itself that can't be accommodated for.

The police did not have the right to "summarily execute" Kayden Clarke, but if he really did try to attack them with a knife, they did have a right to shoot him to save their own lives.  If this is what really happened, then it's not a "human rights" violation as the author states.

Kansen also points out the case of Sky Walker, who was so severely disabled by his autism, he killed his own mother, but then the author of the rebutting article just turns this around and mentions the red herring of the disabilities mourning list of all the autistic people who were killed by others stating that she and I are opposed to autistics having the right not to be killed by their caretakers.  Only a member of the ND movement would be capable of this sort of sophistry.

I won't go into the other specific points, but this article again sums it up linking to another article stating that all of these problems autistics have could be solved if they are accommodated for and their "human rights" were not violated.  I'm still waiting for the neurodiversity movement to be more specific about how i'm opposed to human rights, or more importantly to state how and why autistics could be accommodated for and how this would solve all of the problems and challenges that autistics have, as Ari Ne'eman, and other members of ND, including someone the author links to in their articles states that autism is only a disability because it has not been properly accommodated for and it would cease to be a disabling condition if this would happen.

However, what about my human rights.  Do I have the right not to be called all manner of names like "asshole", "butt wipe"  "turdball" because I disagree with them publicly.  Do I have the right not to have them write libelous statements about me, make fun of my disability and state that I would choose to have this handicap because all or most autistics want to remain autistic.  Or stating that I'm like a jew who sympathized with the nazis during the holocaust.  Or calling my mother bad names or stating that she's a threat to the autism community as one individual commented on Newsweek's site after they published an article profiling me.   

Before neurodiversity uses the strawman of "human rights" again, I feel they should do a better job of respecting mine.  

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, 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,  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 


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.