Monday, February 13, 2017

Stop neurodiversity write to Price and Gordon

Those of you who read my blog, remember that on the day Donald Trump was inaugurated as POTUS, I sent him an email which I posted on this blog, telling him about the neurodiversity movement and urging them not to allow them to serve on the IACC or in other branches of government.  I also wanted to write to Tom Price who was Trump's choice to be HHS secretary.  I delayed doing so because the senate had not yet confirmed his appointment.  Now that the senate has confirmed his appointment, I copied and pasted the long letter that I wrote to Mr. Trump urging him to fire John Elder Robison, Samantha Crane, and any other member of the neurodiversity movement who is involved in governmental autism policy.  I'd like to say to anyone who happens to read this blog post and is an American citizen that I hope you will do the same.  You can contact Dr. Price at secretary@hhs.gov.  Please drop him a line and tell him about the neurodiversity movement and the Autistic self advocacy Network and ask him not to appoint these people.  Also, ask him about the possibility of not even appointing an IACC.  Though the CARES act which authorizes the existence of the IACC can only be amended or repealed by congress, I'm not sure the HHS secretary has any legal obligation to seat an IACC.  I also encourage anyone who feels as I do to write their senators and their congressperson and ask them to repeal or at least amend the CARES act so neurodiversity does not serve in our government.  I've already done this.

Another person whom I've written is Dr. Joshua Gordon, the director of the NIMH who is the person who recommends people to be on the IACC, but really has the last choice, because Kathleen Sebeleius and all the other HHS secretaries just rubber stamped Tom Insel's choices.

Dr. Gordon, has just been appointed as NIMH director this year.  As the case with Dr. Price, I hope these are two new brooms who can sweep clean.

You can contact Dr. Gordon at  nimhinfo@nih.gov and ask him not to appoint any ND's to the IACC or allow them to review government research grants by John Elder Robison, Stephen Shore, or any other ND's.  Ask him not to seat an IACC if he has the power to do so, though I'm not sure what the law is. 

Most if not all of these ND's were appointed by Barak Obama, Kathleen Sebelius sp? and Thomas Insel.  The Obama administration and Insel have been a disaster for autistic people.  I realize the Trump administration most likely is just interested in trying to show vaccines cause autism and does not care about doing anything about the ND movement, but at least that we have some new kids on the block, those of us who feel as I do can at least try to do something about it.

Saturday, February 11, 2017

New MIT lab wants to cure autism

In the occasionally some news is good news department, Gadfly is happy to report that there's a new kid on the block, a new lab at MIT started with a private donation, that has expressed a desire to find a cure and prevention for autism.  Hock Tan and Lisa Yang, parents of two autistic children and MIT alumni, have donated 20 million dollars for this laboratory.  In another article they state they want to erase the devastating effects of autism and want a world free of the burdens of autism.  I had wondered if it were possible to use CRISPR genetic editing techniques to prevent or at least do something to help  autism.  Interestingly enough, CRISPR is something that they are interested in using.

Interestingly, Bob DeSimone who runs MIT's brain research lab stated that NIH would not have supported their research in a million years and that the techniques they plan to use are too far out.

Now that Autism Speaks has announced they no longer seek to cure and prevent autism and very mildly autistic board member Stephen Shore has chortled over this with glee on facebook, I'm glad someone else is willing to pick up the mantle and actually try to do something.

However, from the neurodiversity movement's point of view, dem's fighting words.  Cure, prevention, burden are sure to provoke the ire and rancor of these angry and vicious hatemongers.

Tan and Yang's wealth will obliterate the need for the advertising that autism speaks engaged in during their pre sell-out days that angered so many people and led to the cry of "eugenics".  Other than AS, the government, and the Simons Foundation, I've never heard of anyone giving this kind of money for autism research.

There has already been some ND activity over this.  Michelle Dawson has tweeted about this.  More pronounced were the words of Michael J. Carley who stated in the comments section of the first article I linked to:  Cure"? Are you serious? It's 2017! Shame on MIT, an otherwise smart and ethical institution.  The irascible Forbes contributor Emily Willingham has tweeted that numerous autistics have graduated from MIT and asks "you want to prevent them"  An individual on twitter named Michael H who states he's a behavioral neuroscientist and a special educator has called the lab "ableist"  So one is a bigot if they want to cure autism (I may be updating this blog post if I see more angry responses from ND's)

Interesting that the "shame on MIT" comment comes from someone who can get an advanced degree from Columbia, make a decent living, get married twice and have two children he can support (something which most autistics, myself included, will never be able to accomplish).  Not to mention the fact he was diagnosed with Asperger's who did not want to call himself autistic because he didn't want to be lumped in with people who bang their heads and wear adult diapers.  Also, an individual who used someone's death from terminal cancer to aggrandize himself. 

I don't know if this lab's work will ever benefit anyone with autism, particularly in my lifetime, but I wanted to write this post, because I'm so glad that someone has the audacity to express how horrible autism is and uses that nasty four letter word that Carley and others are so offended by.  I can only hope they won't sell out to neurodiversity the way the government and autism speaks have.

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
 

94
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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.