Monday, June 30, 2008

Bashing Autism Speaks: My Turn

It seems that nowadays the chic activity among autism afficianados regardless of their stripes is bashing autism speaks, the microsoft of autism research funding. It does not matter where you lie on the autism political spectrum. If you're a member of the mercury militia you don't like them because they are not devoting enough funding to your pet projects or you feel that they are too dumb to realize autism is not really a genetic condition but rather a man made plague, probably by mercury, but in some cases of people who believe in an environmentally mediated increase in autism prevalence possibly something else. If you are someone who believes in the neurodiversity philosophy you don't like autism speaks because you believe that if they succeed in curing autism the person will be changed and they won't be the same person anymore, they will have a different brain. Or, like the mercury militia, you don't like genetic research, but your reasons are that you believe it will lead to a prenatal test where autistic fetuses will be aborted. Another reason you are unhappy is because they have no autistics who serve on any of the boards or have any position of power in the organization.

But why should I miss out on all the fun, even if due to my beliefs I am totally on the fringe since I have a unique view that does not agree with either camp. Actually I prefer to think I am a metaphorical island where I am one of the few persons interested in autism who is not on the fringe, but that is neither here nor there as my buddy Joseph would say.

I am like the high school kid who wants to join the in crowd or some enviable social clique. I want to join in the fun too, so here it is, surprise surprise to my readers who see I sometimes defend autism speaks because I like the idea of scientific research with the goal of curing or preventing autism. I am now going to come clean, I have some real problems with autism speaks, so I am going to join you in bashing them.

It all goes back to the days of AS's predecessor, CAN, before they were gobbled up by autism speaks in the corporate merger common to both for profit businesses and charitable organizations. In the days of CAN and before I retired when I was employed and had more money to throw around, I used to donate money to CAN, $100 here and there. Also, I donated $100 to CAN's eastcoast counterpart NAAR, another organization that existed before AS existed and was also gobbled up by autism speaks. I have yet to donate money to AS and even if I had it I would not donate a dime to them. But getting back to the topic at hand. I discovered that CAN was not the organization that I envisioned. Sally Bernard, one of the mercury militia's leaders, used her considerable wealth to influence CAN and get them to elect her president of the organization. Then CAN started to fund studies that investigated the possibility that thimerosal caused autism. I knew that thimerosal had nothing to do with autism for reasons I have detailed in an essay that I wrote, http://www.jonathans-stories.com/non-fiction/thimerosal.html where I showed there was a tripling in autism prevelance in the california DDS during a time when the thimerosal an infant received in vaccines was stable. So I was rather appalled that they would appoint Bernard to a position of huge power in their organization and would fund thimerosal. CAN also had bylaws in writing stating that they would only fund medical research. They then violated their own bylaws by funding some work Ivar Lovaas was doing. This is in spite of the fact that Lovaas has not published any adult outcomes from his 1987 study in spite of receiving funding from NIMH to do so. I stopped donating money to CAN after that.

Not much later, CAN became extinct after they and NAAR were gobbled up by autism speaks. I hoped the direction that autism speaks would take would be different from CAN, I hoped they would not make some of the same boneheaded mistakes that CAN made, but they did not fail to disappoint me.

Recently I found out that Luc Keita, a post-doctoral fellow that works in Dr. Laurent Mottron's lab receives funding from an autism speaks grant. Dr. Mottron also has a somewhat cozy relationship with autism speaks and attends their conferences, I know because I met him at one. Dr. Mottron also employs that well known activist in the anti-curebie movement Michelle Dawson. Michelle implies in one of her essays that anyone who would want a cure for a severely autistic boy who scratches his sister, damages the families property and keeps them all awake howling at night is somehow an intolerant bigot. Because I want to cure autism and wrote an essay detailing my suffering from autism she states that I want to deny autistic people, of which I am one, their civil rights. In spite of the fact that autism speaks plainly states they want a cure and prevention for autism, Dawson calls them a credible fund raising organization. Either she is a hypocrite or she believes that autistic people are write-offs who should have no rights whatsoever in spite of her rhetoric. What autism speaks does by funding the Mottron lab is in my opinion the equivalent to promoting a private in the army who makes propaganda broadcasts for the enemy during wartime to rank of general rather than court martialing him and prosecuting him for treason. If anyone feels that statement is inflammatory, so be it. Ms. Dawson seems to tell me that other scientists she has worked with have grants from AS. She encourages other scientists to get grants from AS regardless of whether or not they agree with the pro cure philosophy of AS. Dawson argues that science and politics are not intertwined. I disagree. In the case of autism speaks politics clearly begot scientific funding. Bob and Suzanne Wright worked hard to start this organization so their grandson would have an improbable shot of living a better life and not end up being crippled by autism for the rest of his life. The AS walks, the donations, etc. were all most likely begotten by people desiring a cure for autism, many, whom I suspect never heard of the ND movement and would probably be shocked that something like it could conceivably exist. Dawson's statements remind me of the 32-year-old trophy wife who marries the 67 year old billionaire and states that money and lust are not intertwined.

Probably even more bizarre I found out that autism speaks includes on its advisory committees Morton Gernsbacher. A psychology professor in Wisconsin who has an autistic child and does research in autism and wrote an essay entitled autistics need acceptance not cure. Ironically enough she was on some review committees for CAN when it existed also. I am mystified by why Dr. Gernsbacher who believes that autism should be accepted rather than cured would serve on scientific advisory boards of organizations whose philosophies I would think would be anathema to her own. But the more important question is why would autism speaks have a relationship with someone like that. After all, we don't hire John Dillinger and Al Capone to be police officers or FBI agents. So yes, autism speaks is not a terribly bright organization given the fact they would have an affiliation with such people who undermine the efforts and desires of those of us who view autism as a horrific affliction and wish that it could be cured and prevented (not abortions of autistic fetuses but prevented by altering the genetic mutation so the child won't have to grow up as a cripple).

Also, I agree with my pals in the neurodiversity movement. Autism Speaks should have autistic people on their boards or in positions of power, this is another reason I am not terribly fond of them. If a pro-cure autistic such as myself were on the board, they would not make the slip shod decisions of the NTs that run AS do that would actually fund a lab that employs michelle dawson, someone who gives aide and comfort to our enemy, autism The pro-cure autistics would have the intelligence not to allow an anti-cure person like Morton Gernsbacher to sit on their advisory committees. That is why they should not only put me on the board but allow me to run the whole show there. Anti-cure people would not be allowed to be involved with autism speaks, their funding would be discontinued as would the funding of any lab such as the Mottron lab who would employ such a person. anti-cure people would not be allowed to sit on scientific and advisory committees on an organization that has plainly said their main purpose is to seek a cure for autism. It would seem that these would be common sense decisions but apparently all common sense has been thrown out the window as far as the people who run AS are concerned.

But I don't think the neurodiversity affcianados would be happy with pro-cure autistics serving on the board. They would just call us token autistics or house autistics or say we were on the take. There are some who would say, that the majority of autistics don't want to be cured so we are not truly representative. To the neurodiversity people I have this to say, autism speaks is a pro-cure organization, the people who started it, acquired charitable donations, who donated their money to this organization walked the 5 kilometers for autism etc. all likely want a cure. They don't agree with you. So why should they allow you to serve on the board of autism speaks? If you want, start your own charitable organization and raise money to help your own cause. Don't expect to be a trophy wife who marries a much older man out of convenience because there is ready made capital to be had. Do your own work. Or is it that your movement is really so impotent, that you really have no alternative to latching onto autism speaks and try to use their money to promote your misguided agenda?

Zach Lassiter who has gained some celebrity through the t-shirt controversy absolutely had the right idea. I agree with his message that autism speaks does not speak for him and many other persons on the spectrum. These people have asperger's and not autism. They are speaking for people much more severely afflicted than you, so if autism speaks should go away, you should go away too. Go away neurodiversity asperger's people, you don't speak for me and you don't speak for autism speaks and there is no reason why you should. Zach if you happen to read this, thank you very much for your message that you printed on your t-shirt. If you want to make some money, Zach, maybe you could make another t-shirt and sell it to some pro cure people, particularly those involved with autism speaks and have the message on it:
"You don't speak for autism speaks, autism speaks speaks for itself, go away neurodiversity."

In the same vein, Sally Bernard and her minions don't need to serve on the boards of autism speaks or CAN. Sally and Tom's net worth is 15 times larger than autism speaks' assets if I am not mistaken. Clearly they can afford to start their own organization, they already have with SAFE MINDS. They can acquire all the capital they need to pursue their misguided agenda.

Well that is my bash of autism speaks and my take on things, I am glad I did not get left out of the party and I hope that all of those people who thought I was the only person left on the planet who liked autism speaks are happy.

21 comments:

concerned heart said...

I also bash Autism Speaks because I know they know that plenty of non-familial autism is caused by older paternal age in one generation or another and they never use their fortune to warn people about the relationship between the male genetic biological clock and autism.

jonathan said...

Well, concerned heart, I am not sure that they necessarily need to do that. Anyone who has read the studies of Jonathan Sebat and that team from israel knows about this. It has not only been reported in the scientific journals it has also been reported in the general media. That is in fact how I found out about it as I have been lax in recent years in reading the scientific literature so it is pretty common knowledge, so though I have problems with autism speaks I think this is a rather non-issue as far autism speaks is concerned.

I do agree it is an issue that needs to be raised and I am glad you have a blog that addresses this issue. I also think it is going to be used as an avenue for further research though I might be wrong about that.

Foresam said...

The age of the father has nothing to do with autism. If it did, some old guys would have produced autistic kids before 1931 when autism was invented by Eli Lilly and thimerosal.

jonathan said...

Well you are certainly entitled to your opinion, John and if I ever go to hollywood park or santa anita again, I will be emailing you and see if you can give me any good tips about picking winners. But I am not as smart about handicapping as you. I just look at the Beyer figures and the workouts and don't take too much else into account. This has picked some winners for me albeit at low prices but I still can't make money wagering on the ponies like you can.

Foresam said...

I used to use Beyer numbers but not anymore. You need to watch how horses cycle into and out of form. Aside from the best stakes level horses, most do not run consistent Beyer numbers. A horse who runs a good Beyer is usually more likely to "bounce" in his next outing.
Try looking for horses who have not raced in at least six weeks but have a class edge on most of their competition. Some are short prices but lots of them go off at better than 10 to 1. In general, horses whose odds are lower than their morning line at about 5 minutes to post are good bets. That includes 15 to 1 shots whose ML is 20 to 1, good shot at getting in the money for exactas and tri's.

Take a look at "E ponies" sometime. They make some excellent figures to use and easier to read than the DRF.

jonathan said...

thanks for the tips, John

Ender said...

Johnyboy, autism didn't exist before 1931 occording to you. Are you saying Fragile X syndrome (which causes autism in many/most cases) was not around until then either. If it was, then it was probably not noticed then. If it wasn't then that leaves the question of how a genetic disorder was invented in the past 75 years. You say that no one had ever seen an autistic before 1931... but fragile X existed before then... confusing aint it.

Occording to several internet websites it was discovered in 1969. Do you really want to suggest that it wasn't noticed before then? Or do you want to assume that it is unrecognizable. When 6% of autism cases today are caused by it, it seems that it should have been noticed by 1931. I mean thats 1/2500 kids today, and presumably would have been back then too. Are you really suggesting that widespread of a disorder would have been unnoticable. Or did Eli Lilly cause that too?

Anonymous said...

Wow. I thought this was tongue-in-cheek until I read the comments. [shakes head] Good luck, everyone - until the communities can pull together better than this, luck may be all we have. [signed] An Autistic Adult

Foresam said...

Ender,
Fragile x is fragile x, not autism. Autism is mercury poisoning.

Ender said...

Fragile X is the leading genetic cause of autism. No doctor in the world would disagree with me on that. So I take it, that it is your contention that it didn't exist before autism was "discovered". So that means in the past 70 years it has gone from not existing to effecting .04% of the population. Quite some growth there. And without the help of Eli Lilly or any vaccinations. How do you explain that little one. Is it possible that people had autism before it was "discovered"?

Joseph said...

The point John never seems to be able to address is that if autism only existed since it was discovered, why can't we say the same about Fragile X, Rett's, Tuberous Sclerosis and even Down's? Didn't they start to exist shortly before they were discovered? Why not?

The answers you get are circular, of course.

For example, I once asked him what Rett's was called before 1944. He said it must have been called brain damage. Why couldn't autism been called brain damage? Well, because Kanner said it had never been seen before. Round and round we go.

Foresam said...

Joseph,
I thought you were afraid to enter into discussion with me since I exposed Kathleen for the lying pig that she is and you banned me from your blog.

There's no circular reasoning here, Joe, except from you and Ender. Fragile x is so rare that it would be unlikely that anyone ever saw two cases of it. And, in Kanner's time, there was no genetic testing to figure it out. Since it is similar to autism, it gets lumped in with it, just like the way you propagandists try to lump in Asperger's with it.

This does not negate the fact that mercury poisoning which was misnamed autism, was recognized as a new disorder, having never been seen before. Comparing it to any other disorder is a bad analogy.

Autism was not called brain damage or anything else because Eli Lilly invented it in 1931. And, it just kept growing. You can probably tell me if Downs has remained constant throughout time, at least until lots of them began to be aborted.

Ender said...

Sam, why do you use rates of autism that take into account people with asperger's then? I mean we are propaganists that "lump asperger's with autism" you certainly should not do the same thing. Take it out of your statistics it shouldn't be too hard. Along with that how about you stop pushing for a cure to asperger's and stop insisting that asperger's must be caused the same way. You do that and you might get rid of a lot of your negative attention. Course we know you will continue to play victim while attacking... it is what you do.

Beyond that I don't imagine a disorder that effects 1/2500 people could go totally unnoticed. I mean it is the second leading cause of mental retardation today. This means that in largedinstitutions there would be bound to be several people with it. When autism was first noticed it was a select few people that they noticed had it. But yet no one came up with a name for it, it wouldn't be Fragile X but certainly a name like "autism" would have worked. Maybe it is possible Kanner was just the first to connect the dots... nah thats impossible.

P.S. Seriously, I bet if you stopped attacking aspies and HFA you would stop getting attacked yourself. Food for thought.

P.S. #2 Are you honestly complaining about being banned from a site when you have banned God only knows how many people from your own site for no other reason then they disagreed with you.

Ender said...

Hey Joesph, drop me a line sometime at fnofsports@hotmail.com I like your style

Ender said...

One more thing... Downs Syndrome wasn't discovered until 1866, though it has probably existed for centuries if not longer and in my short time on this planet I have known many people with the disorder. That sorta takes away your, "It is discovered as soon as it comes out" theory. Thanks for the idea Joesph http://www.downs-syndrome.org.uk/DSA_Faqs.aspx#faq46

Foresam said...

Ender,
I haven't banned anyone from my site. I delete lots of comments that are off topic and just plain stupid.

People with Asperger's have a diminished mental capacity. You have to consider the whole person, not just some aspect of the disorder that may allow Aspie's to be proficient at one thing. For lots of them, their lives suck. That should be improved if possible.

The negative attention I receive comes from people with mercury damaged brains who believe the propaganda from Neuroinsanity. They are the victims here, not me. Neuroinsanity has done a wonderful con job on you Aspie's and you lap it up like drunks who have some idiot encouraging them to stay drunk. It's like fat girls who decide to become lesbians because no man will have them instead of losing weight. Our society today enables all sorts of deviant behavior and you are also a victim of that.

Ender said...

Ummm you forgot to comment on Down's not being discovered til the mid-1800s despite having existed since the beginning of time, most likely. Is it possible, nah probable, that doctors missed an obvious disorder for centuries and even millinia. Nah, that couldn't happen.

As for needing the whole person. I have known a great many atheletes who were/are jerks and dumb as dirt (anyone who could actually fail a test in an education class has something wrong with them) but would be worshipped by you. And you are so obsessed with horse racing you aren't really a whole person. I don't think anyone is, many people believe that we get so much to spend in our various intelligences. Aspies just spend it differently then you do. Not better not worse, but then again I don't see you getting published Johnyboy, being outdone by a 12 year old aspie, sounds bad to me.

So lets come to some sortof agreement. You don't force the cure upon anyone who is high functioning as a kid. You can try to force it upon your child all you want, though it seems to be doing little good. In addition to that you can force the cure on other low functioning kids all you want. And you can make the cure avaible to adults and young adults all you want, but don't force it upon them. Sound fair to you?

jypsy said...

Pennsylvania Tells Autism Speaks to Stop Talking

PITTSBURGH, July 3 /PRNewswire-USNewswire/ -- Yesterday in a historical and unprecedented move, the Pennsylvania legislature voted nearly unanimously in the affirmative for House Bill 1150 to mandate commercial insurance
companies to cover some services for children with autism. The bill, introduced by House Speaker Dennis M. O'Brien, requires insurance companies to cover up to $36,000 of autism-related treatment for individuals less than
21 years old.

In nearly one full week of roller-coaster negotiations with the House
Banking and Insurance Committee, headed by Senator Don White, the bill was stripped of all useful language, leaving Pennsylvania children with autism vulnerable to denials of coverage. House speaker O'Brien, along with
Pennsylvania Governor Edward G. Rendell and Secretary Estelle Richman of the Department of Public Welfare joined in condemning the gutting of the bill.
"The current version of HB 1150 may look like it gives coverage to families affected by autism, but it's an illusion. This version will actually hurt some families who have kids with autism. This risk is unacceptable," said
Speaker O'Brien in a statement released on June 29, 2008.

Autism Speaks, a national organization that conducts fundraising for research, and their paid lobbyists from Ikon, Inc., made several back-door
concessions on the bill without the consent of Speaker O'Brien. In an unparalleled move, the entire Pennsylvania and national autism community stood in unity to support Speaker O'Brien to say "Only the Speaker Speaks
for me." Over 62 organizations across Pennsylvania and nationally converged to show support for the Speaker, who has a nephew with autism.

"This is an amazing effort on the part of the entire autism community to tell Autism Speaks that the children come first, not politics," said Cindy Waeltermann, President of AutismLink, a statewide Pennsylvania autism
advocacy and information organization. "I think it is abundantly clear that Autism Speaks is not speaking for Pennsylvania. I've never seen this
type of grassroots activity in all my years in the autism community. This level of unity definitely sends a clear message, but is Autism Speaks listening?"

State Senator Jane Clare Orie, head of the Pennsylvania Autism Caucus touted the document as "a gold standard of care" for Pennsylvanians.

"Only with Speaker O'Brien's amendments, does HB 1150 become the strongest autism insurance legislation in the nation," said Karen Woodings, former president of the Autism Society of America, Greater Harrisburg Area Chapter. "I find it difficult to comprehend any autism organization not
supporting the Speaker's desire to pass the strongest bill possible. I was proud that the Autism Society of America stood firmly behind Speaker O'Brien on a local, state, and national level. The support of Pennsylvanians
affected by autism enabled Dennis O'Brien to fight for his bill and leave a legacy that will last far beyond his time as Speaker of the House."

Ender said...

So I take it Johnyboys not going to respond to me about there being no downs kids in the early 1800s. Typical.

Foresam said...

Ender,
Downs has nothing to do with autism. It's genetic while autism is man-made.

Nobody could ever confuse a person with Downs with an autistic person. However, people with Downs are also susceptible to autism since they may also have an inability to excrete mercury.

I believe the former name for Downs was "Mongolian Idiot". There is no former name for autism since it did not exist.

Ender said...

Actually from what I have seen "mongolian idiot" is a mostly 20th century term. But considering all the traits of Down's other then mental retardation, especcially in appearence and health problems, I can't believe it wouldn't have been discovered as its own disorder before the mid19th century. Seems just as unlikely as autism not being discovered for a great period of time. Course you have to be right.

But then again, it is obvious that you are deserate for someone to blame for your condition. It has to be someones fault, can't be your own, can't be your wifes, can't be Gods will, it has to be your doctors malpractice. Seems like a perfect scapegoat.