Friday, January 20, 2017

My open letter to Donald Trump regarding neurodiversity

January 20, 2017

Dear Mr. President:

     I’m a sixty-one-year-old man with an autism spectrum disorder.  This disability has made my life very difficult.  It has prevented me from ever having a girlfriend, I’ve had very few friends and it has greatly impaired my ability to make a living.  I worked sporadically between 1979 and 2006 but was fired from more than twenty jobs.  Because of this, I retired at the age of fifty-one.  I was denied social security disability insurance and am supported by my elderly parents who might not be around much longer. 

I had to go to special education schools for eight years and was expelled from a mainstream school.  I barely graduated high school and then barely graduated college.  I have to do a self-stimulatory behavior during the day which impairs me from being able to do the writing I want to do and it makes it hard for me to get anything done.  I have horrible fine motor coordination and have nearly illegible handwriting.  I have a very loud voice, repeat a lot of the same things over and over again and people find my behavior offensive.  Compared to most others on the autism spectrum, I have it good.  In addition to supportive parents, my affliction is mild.  There are others who can’t speak, injure themselves by banging their heads into walls, are incontinent, and need life-long care.  I long for research to be done into how people with my disability can be helped.  Ultimately, I’d like a cure for autism, though I realize that’s unlikely to happen in my lifetime. 

The reason I write you this letter is because the executive branch of the government, namely the secretary of health and human services who will serve under you, appoints members to the Interagency Autism Coordinating Committee which advises the government on autism funding and policies.  Some of the past and present appointees belong to an insidious movement called Neurodiversity.   These people do not believe that autism is a disorder, and, in some cases, do not believe that it is a disability.  They make the untrue claim that acceptance and the correct accommodations will resolve the difficulties people on the autism spectrum have.  A number of these individuals have been appointed to posts in the federal government and make decisions on how American tax dollars are allocated for autism matters.  They are opposed to curing autism or doing things that will really benefit autistic people.  I don’t believe these people should be involved in making decisions using American tax dollars. 

     One of these people is named Ari Ne’eman.  He heads a non-profit organization called the Autistic self-advocacy Network.  Since the CARES (formally combating autism) act was made law by congress, his organization has had a chair at the Interagency Autism Coordinating Committee.  In the past he’s stated that he does not believe that autism is a disability or that if it is a disability it is because of societal constraints.  He’s barely afflicted by his alleged autism if at all.  He has implied that people who want to cure autism are morally complicit with murder.  He has stated that the solution for autistic unemployment is to eliminate social pleasantry as a hiring criteria on the job.  He has also called you a fascist saying he would not work with you for that reason.  Therefore, I don’t believe that he or anyone representing his organization should be appointed to the Interagency Autism Coordinating Committee.  

     Another individual who has served on this committee multiple years is John Elder Robison.  Mr. Robison has stated that there is no need to find a cure for autism.  He has stated that treatments should only be left up to the autistic person and that parents should not have any say in the matter of the health of their own children.  He has stated that parents who seek treatments for their children often do so as a matter of convenience and not to help the child.  He has made the claim that no one had heard of autistic people in the nineteenth century because they blended into the general population due to the type of society it is.  He also has made the insensitive and ignorant comment that most autistic people don’t suffer from autism but rather from depression and anxiety.  I feel these statements trivialize my disability and I don’t feel that Mr. Robison should be on any government committees or supported by or consulted by the government on any autism-related matters. 

     Noah Britton is another individual alleging to be on the autism spectrum who has been appointed to this post.  He has compared parents who want to help their children with members of the Ku Klux Klan.  He stated that he represented thousands of persons on the spectrum who don’t want a cure.  He has made a mockery of a U.S. government meeting by wearing a raunchy shirt with the letters “my body my choice” emblazoned on the front. 

     Another individual named Matt Carey has also served on this committee and he has advocated for the ideas of neurodiversity. 

     I don’t believe that persons such as these or the organizations they represent should have any involvement in governmental policy making related to autism. And I am writing this to you in the hopes that you can do something about it.

    Though there is a law enacted by congress authorizing this Interagency Autism Coordinating Committee, these people are appointed by the executive branch of the government, namely the Department of Health and Human services.  I am writing you this letter urging you and your HHS secretary designee, Tom Price, not to appoint these people to the IACC or preferably anyone else to the IACC.  There is no other medical condition other than autism where they have lay people who give input to the government or policy and science matters.  For example, there is nothing like this for diabetes.  We don’t have people like these serving on FDA panels to decide which antibiotics are approved just because they or their loved ones have had an infection.  Ergo, there is no reason for something like this in autism either. 

     These members of neurodiversity only undermine and trivialize what is a horrible medical condition.  I will forward a copy of this letter to Mr. Price once he is confirmed by the senate to his post. 

     Your consideration in this matter is greatly appreciated,

Jonathan Mitchell  

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.